As you all know by now, Mom died this past Sunday, October 5th 2010, at just past 10 a.m. I thought I would wrap up this blog with the obituary Dad wrote for mom and would finish with what I thought to be a very poignant response to the obituary from some friends of mom and dad's, and some quick final words of my own.
Jane Ursula Cooke Brynn died in Charlotte, N. C. on December 5, 2010. The daughter of the late John Joseph Cooke and Virginia Humphreys Cooke, she is survived by her husband of 43 years, Ambassador Edward Brynn (currently the Department of State Historian), five children and their spouses, eight grandchildren, and four brothers and a sister.
One of eight children, she was raised in the Park Slope section of Brooklyn and in Garden City, New York. Mrs. Brynn graduated from Rosemont College in Philadelphia, studied at the University of Edinburgh and San Francisco State University, and received graduate degrees from Stanford University and the University of Denver.
Before her marriage in 1967, Mrs. Brynn worked for AT&T in New York as one of the first generation of computer programmers. After her marriage she saw much of the world through a richly textured personal and professional life. In Ireland, she was one of the first women to hold a position of managerial responsibility in the Irish banking system. In Sri Lanka, she was active in women's rights issues. Three of her five children were born during her husband's assignments on the faculty of the United States Air Force Academy. Mrs. Brynn burnished her skills during that period as an editor of doctoral dissertations while pursuing an advanced degree at the University of Denver.
Mrs. Brynn began work with the Department of State as a contractor in 1978, and entered the Foreign Service in 1989. She served as a budget and finance director in American embassies in Mali, Guinea, the Comoros Islands, and Ghana. She was appointed Deputy Director of Budget and Finance at the American embassy in Bonn in 1991 and finished her career in charge of Budget and Finance at the American embassy in Paris. On excursion tours she helped to open new embassies in the former Soviet Union, promoted improved administration and accountability in our embassies in Congo, Eritrea, The Gambia and at other posts. She hosted First Lady Hillary Clinton during President Clinton's visit to Ghana in 1998. She received numerous awards from the Department of State during her career.
After retirement in early 2000, Mrs. Brynn served on the board of WDAV, the National Public Radio classical music station in Davidson, N.C. She was a docent at the Levine Museum of the New South, and volunteered in local primary schools. She supported the World Affairs Council of Charlotte.
Mrs. Brynn traveled extensively: to the Far East and India; to the Middle East and Sahelian and Southern Africa; to Turkey; to the Coptic rock churches in Ethiopia and up the Nile from Cairo; to the Caribbean; and through almost all of Western Europe, with special emphasis on her beloved France.
Mrs. Brynn was an avid reader, bridge player, tennis player, and fan of Italian and French opera. In addition to pursuing her career in the Foreign Service, she tackled with great determination and humor the challenges of raising five children in South Asia and Africa, and supported her husband's diplomatic and social commitments in more than a half dozen posts overseas.
To celebrate her earnest commitment to classical music, a fund has been established to promote awareness of classical music in the Charlotte region. In lieu of flowers, contributions to the Jane Cooke Brynn Musical Education Fund at WDAV would be welcomed. WDAV can be contacted by mail at WDAV 89.9, Box 8990, 423 North Main Street, Davidson, N.C. 28035-8990, by phone at (877) 333-8990, and on the web at www.wdav.org.
Interment will take place in Green-Wood Cemetery in Brooklyn, New York. Memorials will also take place in Charlotte and Washington, D.C. for her friends in those areas.
And a particularly well developed response, written to Dad:
While recounting the many dimensions of whom you rightfully describe as a remarkable woman, Jane's obituary resembles the journalist's credo of letting the facts of her life hint at what she was like throughout that journey. They encourage us as its readers to consider, to remember her as the person whom we knew, loved, and treasured. And how could we refrain from that and how could we not love her.
Indeed, from the time we were aware of her illness, Caroline and I were compelled time and again to bring her to mind, drawing on memories and experiences of both long ago and more recently. And she never changed. Jane was beautiful. She was articulate. She was smart. She was full of humor. She was kind and generous. She saw through people, sometimes very candidly, typically with humor, but she always came back to their positive attributes and to their virtues rather than their faults.
She had a wonderful smile, sometimes arch, always kind and indulgent. She was direct. She could not be bottled up, and who would want that, as she shared her thoughts, opinions, hopes, insights, and information. Jane was resilient and strong and knew exactly what had to be done. There was not a moment's hesitation in adopting, raising, loving her sister's children as her own. Those five children you mentioned in the obit were truly her own and yours.
Jane's embrace extended beyond ther family to the whole world around her. It was aesthetic, yes, and that was important, but it also swept in people. Her relationships with others communicated sincere interest in them, an ability to accept who they were but, also when needed, to lend a helping hand and a kind thought.
We saw all of this first hand, close up, in the time we shared very intensely in Sri Lanka, now 35 years ago and counting, but consider multiplying that by the multiples of years since then, as we have, marveling, and - one shakes one's head and reflects - what a life she led, what impact she had. If these memories and firm judgements, formed so many years in the past still remain fresh to us, when those of others who were there then have faded, they speak of the "remarkable woman" Jane was. Remarkable not only in her achievements in the worlds of raising a family so well, in the world of her career, and the world of volunteer work, but as a lady who stood above the crowd.
"Edward", she always called you - not always approvingly, depending on circumstances and perhaps on the dubious characters Foreign Service work requires association with, and on ventures that gripped you - you were a lucky man. If a pair was ever made for each other it was you and she.
We mourn her and mourn with you. The images and memories we have of her will always remain with us. And we are the lucky ones also for having known and loved Jane Cooke Brynn.
Well, impossible to follow that without sounding like a "maroon", but what the heck. . .
Mom was, among other things, a "giver". And as I have reflected on the very rewarding and challenging times we spent with mom over these past several months, I have come to realize that even in her final horrific battle with brain cancer, mom continued to give more than we could have imagined. As we stood around her bed on Sunday morning, crying and hugging each other as she took her final breaths, it was clear that the family had never been stronger than it was at that very moment, and that it was our efforts to rally with mom over these past 16 months that had gotten us there and prepared us for the years ahead without her.
Thanks for everything, Mom. You will always be loved, missed, and remembered.
Tuesday, December 7, 2010
Wednesday, December 1, 2010
12/1/10 - Update
I am sitting in mom's room in Charlotte - opera music in the background, mom in the hospital bed next to me. Hospice has just come through to give her a bath and change her bedding.
Thanksgiving was very good, all things considered. Lots of youthful exuberance (Kiernan's girls, my kids, Justin's three month old baby girl Sofia) led the charge in games of chess, croquet, checkers, basketball, and, in Sofia's case, cheerful gurgling. The trip to some friends' to fry a turkey was a clear highlight (as it was last year - once you go fried, you'll never go back!). Kiernan's smoked turkey was - in his own words - spectacular (others agreed), and between the two turkeys even Dad has had his fill of turkey legs.
So all in all a very positive family expience, despite the clearly difficult times. The kids handled their interactions with mom very well, much to my relief (though I should have remembered that kids have an incredible ability to adapt to whatever situations come their way and should not have been as concerned as I was).
As I indicated in my last post, we had been observing that mom was progressing into the final phase, and this progression has continued since. She is now in the final stage of that phase. She has slept almost without interruption for the past 48 hours and has taken little food and water over that period. We met with the head hospice nurse yesterday, and she indicated that once the body no longer wants to eat or drink we should not force it to do so as it would only make things harder on the body. She indicated that mom's body is beginning the process of shutting down and we should allow it to do so on its own terms. Not a surprise, though clearly saddening nonetheless.
Our final mission at this point remains the same - keep mom as comfortable as possible. We have pain and anxiety medication - both in liquid form - that we now administer on schedule (as opposed to on demand). She is no longer on any Chemo regimen. Aside from managing her medication and changing her bedding and the dressing on her wound, we simply spend time sitting with her in her room and remembering all the good times we've had together. A very good friend of mine recently wrote to me that the one blessing of cancer is that it allows time to say goodbye and to grieve. This we continue to do.
Love to all, and thanks for all the support and well wishes.
Ted
Thanksgiving was very good, all things considered. Lots of youthful exuberance (Kiernan's girls, my kids, Justin's three month old baby girl Sofia) led the charge in games of chess, croquet, checkers, basketball, and, in Sofia's case, cheerful gurgling. The trip to some friends' to fry a turkey was a clear highlight (as it was last year - once you go fried, you'll never go back!). Kiernan's smoked turkey was - in his own words - spectacular (others agreed), and between the two turkeys even Dad has had his fill of turkey legs.
So all in all a very positive family expience, despite the clearly difficult times. The kids handled their interactions with mom very well, much to my relief (though I should have remembered that kids have an incredible ability to adapt to whatever situations come their way and should not have been as concerned as I was).
As I indicated in my last post, we had been observing that mom was progressing into the final phase, and this progression has continued since. She is now in the final stage of that phase. She has slept almost without interruption for the past 48 hours and has taken little food and water over that period. We met with the head hospice nurse yesterday, and she indicated that once the body no longer wants to eat or drink we should not force it to do so as it would only make things harder on the body. She indicated that mom's body is beginning the process of shutting down and we should allow it to do so on its own terms. Not a surprise, though clearly saddening nonetheless.
Our final mission at this point remains the same - keep mom as comfortable as possible. We have pain and anxiety medication - both in liquid form - that we now administer on schedule (as opposed to on demand). She is no longer on any Chemo regimen. Aside from managing her medication and changing her bedding and the dressing on her wound, we simply spend time sitting with her in her room and remembering all the good times we've had together. A very good friend of mine recently wrote to me that the one blessing of cancer is that it allows time to say goodbye and to grieve. This we continue to do.
Love to all, and thanks for all the support and well wishes.
Ted
Monday, November 15, 2010
11/15/10 - Update
Summary of our meeting with the hospice group.
Mom, Dad, Justin and I met with a couple of nurses from Lake Norman Hospice yesterday. Prior to the meeting, as you know, mom had heard from her doctors that a shift in focus to more of quality of life focus was probably in order. Further, on Wednesday during mom’s weekly bloodwork appointment, in a conversation with Cathy (we need to do something special for Cathy down the road - she really has been a godsend for mom) we addressed the fact that the meeting on Thursday was with a hospice group, but mom seemed receptive to it after Cathy did a good job characterizing it as largely a frame of mind focusing on symptom management.
So yesterday’s meeting came to pass. Two very nice nurses walked us through the program. Nurses, nurses aids come to the house, visiting on average three times per week as we need them. They would bathe mom, check the wound to see how it’s doing (and how well we’re keeping it clean), prescribe pain medication and other medication that would fit under the “palliative” program (think comfort versus treatment). They would help us procure medical equipment that would better enable us move mom safely around the house (becoming very important at this point). Bandages, dressings, etc. would all come standard with the program. In all, it’s very much what you’d expect if nurses ran the medical establishment (in other words, a big step forward from a caring perspective, less technical, more hokie, though not necessarily in a bad way, etc.).
The rub is that mom can not be on a program that is designated by the medical establishment as “curative” or “aggressive” treatment. By the end of the meeting, it had become clear that this is a discussion we still need to pursue with mom - that for her to get the benefits of hospice, she‘ll probably need to decide she no longer needs to be taking the chemo. I say “probably“ because the nurses indicated that in some cases in which a treatment is more palliative than curative, which is clearly where the Temodar is for mom, it can run concurrent with hospice care. The nurses are pursuing with mom's doctor to see what she says. And we may need to try to make a case to this effect as well. But given the somewhat black and white nature of medicare funding, I‘d not be surprised if they don’t get to this point. Regardless, it remains that mom, while much further along the “quality of life” curve, doesn’t yet get it in its entirety (given the recency of this line of thought for her, this is by no means a surprise).
So that’s where we are. Good informative meeting. Nice nurses. Mom no longer rejecting everything conceptually affiliated with the hospice label, but still wood to chop before we‘re ready to enter the program.
I think this is the website. http://www.hpccr.org/lake-norman.cfm.
Love to all. Ted
Mom, Dad, Justin and I met with a couple of nurses from Lake Norman Hospice yesterday. Prior to the meeting, as you know, mom had heard from her doctors that a shift in focus to more of quality of life focus was probably in order. Further, on Wednesday during mom’s weekly bloodwork appointment, in a conversation with Cathy (we need to do something special for Cathy down the road - she really has been a godsend for mom) we addressed the fact that the meeting on Thursday was with a hospice group, but mom seemed receptive to it after Cathy did a good job characterizing it as largely a frame of mind focusing on symptom management.
So yesterday’s meeting came to pass. Two very nice nurses walked us through the program. Nurses, nurses aids come to the house, visiting on average three times per week as we need them. They would bathe mom, check the wound to see how it’s doing (and how well we’re keeping it clean), prescribe pain medication and other medication that would fit under the “palliative” program (think comfort versus treatment). They would help us procure medical equipment that would better enable us move mom safely around the house (becoming very important at this point). Bandages, dressings, etc. would all come standard with the program. In all, it’s very much what you’d expect if nurses ran the medical establishment (in other words, a big step forward from a caring perspective, less technical, more hokie, though not necessarily in a bad way, etc.).
The rub is that mom can not be on a program that is designated by the medical establishment as “curative” or “aggressive” treatment. By the end of the meeting, it had become clear that this is a discussion we still need to pursue with mom - that for her to get the benefits of hospice, she‘ll probably need to decide she no longer needs to be taking the chemo. I say “probably“ because the nurses indicated that in some cases in which a treatment is more palliative than curative, which is clearly where the Temodar is for mom, it can run concurrent with hospice care. The nurses are pursuing with mom's doctor to see what she says. And we may need to try to make a case to this effect as well. But given the somewhat black and white nature of medicare funding, I‘d not be surprised if they don’t get to this point. Regardless, it remains that mom, while much further along the “quality of life” curve, doesn’t yet get it in its entirety (given the recency of this line of thought for her, this is by no means a surprise).
So that’s where we are. Good informative meeting. Nice nurses. Mom no longer rejecting everything conceptually affiliated with the hospice label, but still wood to chop before we‘re ready to enter the program.
I think this is the website. http://www.hpccr.org/lake-norman.cfm.
Love to all. Ted
Tuesday, November 9, 2010
11/09/10 - Update
After a couple of full days in Charlotte, and having visited with mom's neurosurgeon yesterday, I figured an update is in order. At the risk of being overly blunt, I will try to keep my thoughts as brief as possible.
Mom's appointment yesterday was the last in a series of meetings with her primary doctors. While each of the previous meetings was to specifically address the condition of the wound and whether it could be fixed, in every instance the message was consistent: that there was little she could reasonably expect to gain from continuing with intense medical intervention.
Yesterday's meeting with the neurosurgeon (who is also affiliated with the plastic surgeon and hence had a role in the management of the wound), while originally intended to be simply a follow up to close the loop on the wound management program, ultimately became much more. The very short of it is that by the end of the meeting, mom believed the doctor had (a) confirmed what the other doctors had told her insofar as it not being worth further aggressively treating the wound, but also (b) that at this point there was little upside to trying new approaches to treating the tumor (whose presumed progression has recently led to mom's losing a significant amount of her physical skills and "independence"). In short, in mom's mind (and I would not disagree), the doctor was gently suggesting to her that it would likely be a good time to shift to the next phase of the battle - one that focuses on maximizing the quality of the remaining life she has left.
And so it is in the final phase of mom's fight that we now find ourselves entering . . . a place towards which, as much as we wanted to believe in our hearts and minds that we would be the very rare exception that would be able to beat this nasty disease, we have been moving for the past 15 months.
We will be meeting with folks from hospice on Thursday to learn more about this palliative program, one that mom has for obvious reasons had little or no interest in discussing since the onset of treatment (and, of course, one which we had little desire to press upon her). The meeting has been framed so far as one that will help us learn to better manage her quality of life through the final weeks, and, hopefully, months of her life, but that has not yet been labeled (to her) as "hospice". This being because its underlying premise and framework, while very acceptable and comforting in our minds, are currently at odds with mom's preconceived and uninformed notions of what hospice is about. We feel it better to have prepared her to receive folks who want to help her live well over her remaining time, regardless of its label, and hope that she will, after having heard the spiel, be able to put her preconceived notions about hospice to bed once and for all and embrace it as have the rest of us. We shall see.
So, I hope that this (I imagine distressing) post has allowed you - whose demonstrated love for mom is the one true clearly wonderful thing that we gained as a result of all of this horribleness - to understand where we are and to allow you to prepare to move with mom through this final phase of her life. One that will, we trust, give us enough time to allow us to communicate to her just how wonderful and influential she has been in our lives, and how much she is and will be forever loved.
Love to all,
Ted
Mom's appointment yesterday was the last in a series of meetings with her primary doctors. While each of the previous meetings was to specifically address the condition of the wound and whether it could be fixed, in every instance the message was consistent: that there was little she could reasonably expect to gain from continuing with intense medical intervention.
Yesterday's meeting with the neurosurgeon (who is also affiliated with the plastic surgeon and hence had a role in the management of the wound), while originally intended to be simply a follow up to close the loop on the wound management program, ultimately became much more. The very short of it is that by the end of the meeting, mom believed the doctor had (a) confirmed what the other doctors had told her insofar as it not being worth further aggressively treating the wound, but also (b) that at this point there was little upside to trying new approaches to treating the tumor (whose presumed progression has recently led to mom's losing a significant amount of her physical skills and "independence"). In short, in mom's mind (and I would not disagree), the doctor was gently suggesting to her that it would likely be a good time to shift to the next phase of the battle - one that focuses on maximizing the quality of the remaining life she has left.
And so it is in the final phase of mom's fight that we now find ourselves entering . . . a place towards which, as much as we wanted to believe in our hearts and minds that we would be the very rare exception that would be able to beat this nasty disease, we have been moving for the past 15 months.
We will be meeting with folks from hospice on Thursday to learn more about this palliative program, one that mom has for obvious reasons had little or no interest in discussing since the onset of treatment (and, of course, one which we had little desire to press upon her). The meeting has been framed so far as one that will help us learn to better manage her quality of life through the final weeks, and, hopefully, months of her life, but that has not yet been labeled (to her) as "hospice". This being because its underlying premise and framework, while very acceptable and comforting in our minds, are currently at odds with mom's preconceived and uninformed notions of what hospice is about. We feel it better to have prepared her to receive folks who want to help her live well over her remaining time, regardless of its label, and hope that she will, after having heard the spiel, be able to put her preconceived notions about hospice to bed once and for all and embrace it as have the rest of us. We shall see.
So, I hope that this (I imagine distressing) post has allowed you - whose demonstrated love for mom is the one true clearly wonderful thing that we gained as a result of all of this horribleness - to understand where we are and to allow you to prepare to move with mom through this final phase of her life. One that will, we trust, give us enough time to allow us to communicate to her just how wonderful and influential she has been in our lives, and how much she is and will be forever loved.
Love to all,
Ted
Monday, November 8, 2010
11/08/10 - Update
The past month has seen a continued progression for the worse, with the wound's stubborn refusal to heal essentially preventing mom from resuming the high-dose anti-tumor regime. As a result, it appears that the tumor has regained the upper hand. We remain (even more so) focused on doing our best to give mom as good as quality of life as possible under the circumstances, and continue to be extremely thankful for all the love and support we receive from friends and family. I will provide a little color (in the form of an email from Dad over the weekend) to help put things in perspective. Love, Ted
Justin and I have been monitoring Mom's increasing invalid condition during the last twenty four to forty eight hours. We have both spoken to some of you already. From my optic these are the portents that seem to be the most worrisome: 1) Mom has no repeat no use of her left leg. She cannot move it, stand on it. The leg is considerably colder than the rest of her body. As a result she is really unable to walk even a step without full support, and she cannot move the left leg forward - we have to move it forward for her. This has developed during the last 24 hours; 2) Mom is mentally acute for short periods, but does not seem to respond to even simple guidance for almost all items: moving her right arm; looking at something; etc.; 3) Mom has frequent instances of incontinence; this is no longer simply a night time phenomenon; 4) Mom is no longer reading more than for a few minutes at a time. She is immersed in some of the VHS films and opera, but even here she drifts in and out; she sits for long periods apparently oblivious to what is going on around her and cannot sit upright unless propped with pillows, etc.
Balancing this: 5) her appetite remains good; 6) for brief periods she is very focused and articulate and her speech shows no signs of slurring; 7) she responded to the idea of shifting Thanksgiving here by saying that she could not possibly do the cooking, thus suggesting that she is still very sensitive to the way things should be done; 8) she does fairly well on the phone, if the conversation is fairly brief; 9) she is sleeping very well and longer and longer (this may or may not be a positive sign); 10) she is as appalled as ever that anyone would vote Republican; 11) she is still very keen on her pills schedule; 12) her toilet routine is good; 12) Mom is not in pain, nor does she seem to suffer any stomach upsetness from the daily chemo regime.
We have decided that Thanksgiving away from Charlotte is now simply not feasible. The participants are willing to come this way, and I am convinced it is for the best.
Love, Dad
Justin and I have been monitoring Mom's increasing invalid condition during the last twenty four to forty eight hours. We have both spoken to some of you already. From my optic these are the portents that seem to be the most worrisome: 1) Mom has no repeat no use of her left leg. She cannot move it, stand on it. The leg is considerably colder than the rest of her body. As a result she is really unable to walk even a step without full support, and she cannot move the left leg forward - we have to move it forward for her. This has developed during the last 24 hours; 2) Mom is mentally acute for short periods, but does not seem to respond to even simple guidance for almost all items: moving her right arm; looking at something; etc.; 3) Mom has frequent instances of incontinence; this is no longer simply a night time phenomenon; 4) Mom is no longer reading more than for a few minutes at a time. She is immersed in some of the VHS films and opera, but even here she drifts in and out; she sits for long periods apparently oblivious to what is going on around her and cannot sit upright unless propped with pillows, etc.
Balancing this: 5) her appetite remains good; 6) for brief periods she is very focused and articulate and her speech shows no signs of slurring; 7) she responded to the idea of shifting Thanksgiving here by saying that she could not possibly do the cooking, thus suggesting that she is still very sensitive to the way things should be done; 8) she does fairly well on the phone, if the conversation is fairly brief; 9) she is sleeping very well and longer and longer (this may or may not be a positive sign); 10) she is as appalled as ever that anyone would vote Republican; 11) she is still very keen on her pills schedule; 12) her toilet routine is good; 12) Mom is not in pain, nor does she seem to suffer any stomach upsetness from the daily chemo regime.
We have decided that Thanksgiving away from Charlotte is now simply not feasible. The participants are willing to come this way, and I am convinced it is for the best.
Love, Dad
Wednesday, October 6, 2010
10/06/10 - Update
A brief update. . . Back in Charlotte in late September, and a vist by Ted from the 27th through the 30th.
The 28th witnessed a trip up to Duke to visit with the team for a follow up meeting and a refresh MRI. As has been the issue over the past several months, the wound on mom's head continues to present problems as far as resuming the full scale Chemo treatment. As we expected, the folks at Duke confirmed that this remains the case. So, they put mom back on a daily regimen of Temodar, which is the Chemo regimen on which she started back in the fall of 2009. The Duke folks said that the tumor has grown since the last visit, though not too much. They, like mom, are anxious to get back on the high-test Chemo regime, but felt that the tumor had not progressed so much that it warranted the very strong treatment given the status of the wound.
Justin in town now and for the foreseeable future, as it appears he and his family will be relocating to the east coast. This of course is a true blessing for Mom. She has responded very well to Justin during every visit, and his presence ensures she will continue to get a full dose of love and attention.
With Justin in charge, Mom visited the plastic surgeon today for a follow up visit. Little progress came as a result of the meeting with the plastic surgeon today (our hope was the he would expedite her meeting with the wound specialist, but his solution rang the same as it did 6 weeks ago when he removed her stitches - a solution that we think everybody would say has proven ineffective). We will likely go a different direction from him going forward and will against his wishes visit a wound care specialist (referral from mom's lead oncologist, at Duke's request) on October 12th. We continue to look for a solution to get the wound to heal.
Mom continues to sleep a lot and would appear on the margin to be getting physically weaker (though not so much that it's extremely apparent at any specific point in time). When she is rested and engaged she remains as vibrant as at any point since the surgery, and her mental capacity surely hasn't diminished since her initial surgery. The fight goes on.
Love to all,
Ted
The 28th witnessed a trip up to Duke to visit with the team for a follow up meeting and a refresh MRI. As has been the issue over the past several months, the wound on mom's head continues to present problems as far as resuming the full scale Chemo treatment. As we expected, the folks at Duke confirmed that this remains the case. So, they put mom back on a daily regimen of Temodar, which is the Chemo regimen on which she started back in the fall of 2009. The Duke folks said that the tumor has grown since the last visit, though not too much. They, like mom, are anxious to get back on the high-test Chemo regime, but felt that the tumor had not progressed so much that it warranted the very strong treatment given the status of the wound.
Justin in town now and for the foreseeable future, as it appears he and his family will be relocating to the east coast. This of course is a true blessing for Mom. She has responded very well to Justin during every visit, and his presence ensures she will continue to get a full dose of love and attention.
With Justin in charge, Mom visited the plastic surgeon today for a follow up visit. Little progress came as a result of the meeting with the plastic surgeon today (our hope was the he would expedite her meeting with the wound specialist, but his solution rang the same as it did 6 weeks ago when he removed her stitches - a solution that we think everybody would say has proven ineffective). We will likely go a different direction from him going forward and will against his wishes visit a wound care specialist (referral from mom's lead oncologist, at Duke's request) on October 12th. We continue to look for a solution to get the wound to heal.
Mom continues to sleep a lot and would appear on the margin to be getting physically weaker (though not so much that it's extremely apparent at any specific point in time). When she is rested and engaged she remains as vibrant as at any point since the surgery, and her mental capacity surely hasn't diminished since her initial surgery. The fight goes on.
Love to all,
Ted
Tuesday, September 14, 2010
09/14/10 - Update
The trip has gone well thus far, but Mom's fragility underscores my relief that we did not try to go to Spain. Mom can walk only a few yards' distance before she needs to sit down. She has slept magnificently here in San Rafael - through the night every night, followed by a morning nap, and usually a late afternoon nap. She is sleeping about 14 hours out of every 24. Her appetite is good. She focuses well for short periods (and for reasons unknown always seems to be at her best on the phone).
Mom enjoyed talking to all of you on her birthday yesterday. K and C have been magnificent in helping her move about. C had access to a TV production of an opera staged by the SF Opera Company (Don Giovanni) and she has enjoyed watching a portion of it each evening before turning in.
We arrived via Delta early afternoon on Saturday. Everything went very well, right from the magnificent help from the Cs, who met us on the dot at 7 a.m. at the cell phone lot at Charlotte airport (but W did not come in his 1929 red Rolls Royce, a major disappointment), through check in at Delta (the staff was very accommodating), to boarding, seating, service, etc. We used our own wheel chair for the trip; this was a blessing, because we could take Mom right to the plane in it, and it was there waiting for us when we disembarked. K was curbside when we came out the door. They returned to San Rafael while I traveled the airport train to find the magnificent monster-vehicle (Ford Expedition). I arrived in San Rafael about 3:30 (the queue for car rentals was long at all the counters; a chap behind the counter told me that they were still recovering from the gas blast on the hillside in San Bruno, just a couple of miles from the runways).
Quiet dinner Saturday evening. Sparkling weather, which explains why 35 million people have moved to California (not all legally, I understand!). Sunday Mom and I drove gently from San Rafael through small stands of Redwoods to the Pacific , stopping for lunch at a funky little place (Nicasio) recommended (rightly so) by C. We avoided beach traffic by staying north of Stinson Beach, and taking advantage of a miracle (an empty parking place right next to a park bench overlooking the Pacific in Bolinas) got out of the car and sat in the coastal grey zone for a few minutes. The shore temperature could not have exceeded sixty, and I bundled Mom in several light blankets. Bolinas is not a style-conscious beach; it attracts the now aged 1960s surfing crowd. They are wizened but tough, carrying their boards to the beach, dressed only in their bathing suits. C noted later that Bolinas does everything it can to fight off the upper classes. Signs everywhere excoriated everything hinting at convention and establishment politics. Many of the license plates came in blue/yellow and black/orange - the motif of license plates in California in the 1950s and 1960s. (So you can turn the clock back - go to Bolinas.)
Sunday evening the W clan gathered for dinner and birthday cake for Mom: E and D; M and A, young B and P, and younger C A. Mom held up well through the cake and a couple of very nice presents.
Yesterday (Monday) Mom and I drove (with K as tour guide) into San Francisco to see old haunts: where Mom lived (Sunset Beach) while at SF State and later with K; North Beach; the refurbished Presidio (the military is out but the officers housing and many barracks have been preserved and converted to offices, very tastefully), Nob Hill, Russian Hill, the hotels we could never afford to have even a cup of coffee in, the famous site of my mother's running out of gas astride the cable car line on Powell, Embarcadero (the Bank of America building now sports a new moniker). Going into SF we took the slow road through Sausalito (I could not recall being there before - very Italian seaside atmosphere).
Last night we went to a bistro in Ross for dinner and had another piece of birthday cake when we got home, and before a short stint with the mandatory opera.
Mom is still asleep (8 a.m.) but when she is up, bathed, pills-armed, etc. we may drive gently up to Healdsburg to one of the small wineries, have some lunch, and return here. K and C leave for three weeks in Europe on Thursday (including biking in Ireland); we will leave tomorrow and head south. We will stop somewhere north of LA, perhaps near one of the mission churches, for Wednesday night, and then position ourselves to greet S, K and the young gentlemen when they arrive in San Diego from Denver Thursday evening. I am glad they and J and S arranged accommodations, because we heard yesterday morning that one of our friends in San Diego is in hospital in the wine country with food poisoning, so we do not know when they will return to San Diego.
Mom enjoyed hearing from all of you yesterday. Again, we are moving very, very slowly, but she does want to get out and to see something every day. Love, Dad"
Mom enjoyed talking to all of you on her birthday yesterday. K and C have been magnificent in helping her move about. C had access to a TV production of an opera staged by the SF Opera Company (Don Giovanni) and she has enjoyed watching a portion of it each evening before turning in.
We arrived via Delta early afternoon on Saturday. Everything went very well, right from the magnificent help from the Cs, who met us on the dot at 7 a.m. at the cell phone lot at Charlotte airport (but W did not come in his 1929 red Rolls Royce, a major disappointment), through check in at Delta (the staff was very accommodating), to boarding, seating, service, etc. We used our own wheel chair for the trip; this was a blessing, because we could take Mom right to the plane in it, and it was there waiting for us when we disembarked. K was curbside when we came out the door. They returned to San Rafael while I traveled the airport train to find the magnificent monster-vehicle (Ford Expedition). I arrived in San Rafael about 3:30 (the queue for car rentals was long at all the counters; a chap behind the counter told me that they were still recovering from the gas blast on the hillside in San Bruno, just a couple of miles from the runways).
Quiet dinner Saturday evening. Sparkling weather, which explains why 35 million people have moved to California (not all legally, I understand!). Sunday Mom and I drove gently from San Rafael through small stands of Redwoods to the Pacific , stopping for lunch at a funky little place (Nicasio) recommended (rightly so) by C. We avoided beach traffic by staying north of Stinson Beach, and taking advantage of a miracle (an empty parking place right next to a park bench overlooking the Pacific in Bolinas) got out of the car and sat in the coastal grey zone for a few minutes. The shore temperature could not have exceeded sixty, and I bundled Mom in several light blankets. Bolinas is not a style-conscious beach; it attracts the now aged 1960s surfing crowd. They are wizened but tough, carrying their boards to the beach, dressed only in their bathing suits. C noted later that Bolinas does everything it can to fight off the upper classes. Signs everywhere excoriated everything hinting at convention and establishment politics. Many of the license plates came in blue/yellow and black/orange - the motif of license plates in California in the 1950s and 1960s. (So you can turn the clock back - go to Bolinas.)
Sunday evening the W clan gathered for dinner and birthday cake for Mom: E and D; M and A, young B and P, and younger C A. Mom held up well through the cake and a couple of very nice presents.
Yesterday (Monday) Mom and I drove (with K as tour guide) into San Francisco to see old haunts: where Mom lived (Sunset Beach) while at SF State and later with K; North Beach; the refurbished Presidio (the military is out but the officers housing and many barracks have been preserved and converted to offices, very tastefully), Nob Hill, Russian Hill, the hotels we could never afford to have even a cup of coffee in, the famous site of my mother's running out of gas astride the cable car line on Powell, Embarcadero (the Bank of America building now sports a new moniker). Going into SF we took the slow road through Sausalito (I could not recall being there before - very Italian seaside atmosphere).
Last night we went to a bistro in Ross for dinner and had another piece of birthday cake when we got home, and before a short stint with the mandatory opera.
Mom is still asleep (8 a.m.) but when she is up, bathed, pills-armed, etc. we may drive gently up to Healdsburg to one of the small wineries, have some lunch, and return here. K and C leave for three weeks in Europe on Thursday (including biking in Ireland); we will leave tomorrow and head south. We will stop somewhere north of LA, perhaps near one of the mission churches, for Wednesday night, and then position ourselves to greet S, K and the young gentlemen when they arrive in San Diego from Denver Thursday evening. I am glad they and J and S arranged accommodations, because we heard yesterday morning that one of our friends in San Diego is in hospital in the wine country with food poisoning, so we do not know when they will return to San Diego.
Mom enjoyed hearing from all of you yesterday. Again, we are moving very, very slowly, but she does want to get out and to see something every day. Love, Dad"
09/08/10 - Update
Another from Dad
"I am getting the house, inside and out, ready for our departure at the end of the week.
On a happier note I think the hole in Mom's head is healing. New skin is filling in the space (there is a ways to go) and inflammation is minimal. I would not be surprised, if the current scenario continues, to find the doctors suggesting very minimum plastic surgery."
"I am getting the house, inside and out, ready for our departure at the end of the week.
On a happier note I think the hole in Mom's head is healing. New skin is filling in the space (there is a ways to go) and inflammation is minimal. I would not be surprised, if the current scenario continues, to find the doctors suggesting very minimum plastic surgery."
09/5/10 - Update
I'll pass along recent updates I've received from Dad.
"All of you except Ted have been aware since early this morning that I faced a certain crisis stemming from Mom's "aura" yesterday. Just after noon, on our way home from leaving K at the airport, she showed the classic symptoms of an "aura". Fortunately we were nearly home and I was able to give her an anti-seizure tablet and give her some rest.
Mom finally went into a deep sleep at 5:30 am. I came away from this experience pretty much convinced that the Spain agenda did not make sense. Before she went to sleep Mom agreed that we needed to rethink this, but this morning, when she was in better shape (but still fragile) she was understandably of two minds about Spain. During the morning we had some pretty frank conversations, and Mom resisted giving up the idea. But she admitted that she had not functioned well last night, and gradually came around to the idea (encouraged by talks with a couple of you) that Spain might not work. I made it plain that I was simply not strong enough to be able to cope in a public environment - such as on a plane or in an airport - with some of the challenges of last night, when she on two occasions was just a dead weight.
Mom slept off and on most of today (not getting up until almost noon and then sleeping on the porch for several hours in short stints). She has not had a recurrence of the "aura" but her speech is still slow, her eyes are not well focused, and her walking is impaired.
Gradually we evolved a plan to substitute for Spain. We will fly to San Francisco later this week, then after staying several days will go down to San Diego. S and the boys will come in about the 16th and stay until the 20th. We will return to San Francisco and then return to Charlotte. We will have several chances to see S and J and the new baby.
We have Duke appointments on September 28th, which will include an MRI (another challenge), meetings with the Dr. and his staff, and making arrangements for the skin graft (the aperture looks good and seems to be filling in with new skin).
Love, Dad
"All of you except Ted have been aware since early this morning that I faced a certain crisis stemming from Mom's "aura" yesterday. Just after noon, on our way home from leaving K at the airport, she showed the classic symptoms of an "aura". Fortunately we were nearly home and I was able to give her an anti-seizure tablet and give her some rest.
Mom finally went into a deep sleep at 5:30 am. I came away from this experience pretty much convinced that the Spain agenda did not make sense. Before she went to sleep Mom agreed that we needed to rethink this, but this morning, when she was in better shape (but still fragile) she was understandably of two minds about Spain. During the morning we had some pretty frank conversations, and Mom resisted giving up the idea. But she admitted that she had not functioned well last night, and gradually came around to the idea (encouraged by talks with a couple of you) that Spain might not work. I made it plain that I was simply not strong enough to be able to cope in a public environment - such as on a plane or in an airport - with some of the challenges of last night, when she on two occasions was just a dead weight.
Mom slept off and on most of today (not getting up until almost noon and then sleeping on the porch for several hours in short stints). She has not had a recurrence of the "aura" but her speech is still slow, her eyes are not well focused, and her walking is impaired.
Gradually we evolved a plan to substitute for Spain. We will fly to San Francisco later this week, then after staying several days will go down to San Diego. S and the boys will come in about the 16th and stay until the 20th. We will return to San Francisco and then return to Charlotte. We will have several chances to see S and J and the new baby.
We have Duke appointments on September 28th, which will include an MRI (another challenge), meetings with the Dr. and his staff, and making arrangements for the skin graft (the aperture looks good and seems to be filling in with new skin).
Love, Dad
Friday, September 3, 2010
09/03/10 - Update
On Tuesday, after a month of recuperation from her early August surgery, Mom revisited the folks at Duke for an follow up MRI and checkup.
Not surprisingly, the MRI procedure itself went poorly (these are never easy for Mom to do, and if she is not sufficiently sedated, as she was not, she has a hard time being still enough). But in the end it was complete.
Not surprisingly, since Mom has been off the chemical treatment for several months now, though of course disappointingly, the tumor has resumed its growth.
As we suspected would be the case, the infection on the side of her head, while markedly better than it was and no longer an infection, has not healed to the point where mom can resume the full scale chemical treatment. As a result, Duke is putting mom on a reduced-strength Chemo program that she will take while the area on her head continues to heal. Once this has happened, all things being equal, she will resume the previous cocktail that proved effective in combating the tumor.
In the meantime, in the spirit of balancing quality of life with an aggressive fight against the tumor, mom and dad have scheduled a trip to Spain. The folks at Duke were very supportive of their doing this. It is something that mom has been focused on doing for a long time and that she is pleased to be able to do. They leave in the next week and will stay for a couple of weeks or so. Upon return, she will go to Duke, have plastic surgery to accelerate the healing of the area on her head, and then will continue the maintenance Chemo program until she is physically ready to resume the full scale assault on the tumor.
And that's about it on the "update" front. As you know, these posts are designed to keep you as up to speed as possible but have historically been designed to keep our respective opinions on her condition somewhat to ourselves, so to speak. So I'll break the mold a bit and offer some thoughts, but not too many. . .
All of you know by now it's a brutal disease with a generally dim prognosis. At the end of the day, I would say that mom's progression through this battle is pretty much in line with expectations, albeit towards the upper end (when all things are considered). On the plus side, we've learned that there is a drug combination that is effective in fighting the tumor. On the down side, however, we've also learned that that drug combination takes a very heavy toll on the rest of her system and can not be taken lightly or continuously. We've seen that she has periods where she is very engaged and sharp and periods in which she is significantly more subdued. These periods seem to be very much driven by what's going on around her and the subject on which she is focused. For me, I'm most pleased that during periods when she is engaged, it's clear that her brain is still very capable of doing many of the things she'd need to do to maintain a good quality of life. On the downside, I would have to say that her energy levels, physical strength, and motor skills are not where I'd hoped they'd be (though they have remained pretty consistent lately), had I known that she would have had a period where she had the upper hand versus the tumor (as she's had over the past few months). Unfortunately, these have significant negative impacts on her quality of life from a day to day perspective. I guess, in sum, things could of course be better, but they could also be a whole lot worse. In the end, most importantly, we are very lucky to have had, and to be able to expect to continue to have, real, high quality interaction with her.
So that's it. As conditions change or we pass through milestones, I'll continue to add posts to the blog. So, while a month between posts is a long time, keep in mind that down the road no news is more a reflection of not much change to the status quo than anything else.
Thank you all for the love and support you have and continue to provide to Mom, Dad, and all of us. I know I speak for my family when I say that we have all been amazed - truly truly amazed - at the extent to which friends and family have demonstrated their love and support.
Love to all,
Ted
Not surprisingly, the MRI procedure itself went poorly (these are never easy for Mom to do, and if she is not sufficiently sedated, as she was not, she has a hard time being still enough). But in the end it was complete.
Not surprisingly, since Mom has been off the chemical treatment for several months now, though of course disappointingly, the tumor has resumed its growth.
As we suspected would be the case, the infection on the side of her head, while markedly better than it was and no longer an infection, has not healed to the point where mom can resume the full scale chemical treatment. As a result, Duke is putting mom on a reduced-strength Chemo program that she will take while the area on her head continues to heal. Once this has happened, all things being equal, she will resume the previous cocktail that proved effective in combating the tumor.
In the meantime, in the spirit of balancing quality of life with an aggressive fight against the tumor, mom and dad have scheduled a trip to Spain. The folks at Duke were very supportive of their doing this. It is something that mom has been focused on doing for a long time and that she is pleased to be able to do. They leave in the next week and will stay for a couple of weeks or so. Upon return, she will go to Duke, have plastic surgery to accelerate the healing of the area on her head, and then will continue the maintenance Chemo program until she is physically ready to resume the full scale assault on the tumor.
And that's about it on the "update" front. As you know, these posts are designed to keep you as up to speed as possible but have historically been designed to keep our respective opinions on her condition somewhat to ourselves, so to speak. So I'll break the mold a bit and offer some thoughts, but not too many. . .
All of you know by now it's a brutal disease with a generally dim prognosis. At the end of the day, I would say that mom's progression through this battle is pretty much in line with expectations, albeit towards the upper end (when all things are considered). On the plus side, we've learned that there is a drug combination that is effective in fighting the tumor. On the down side, however, we've also learned that that drug combination takes a very heavy toll on the rest of her system and can not be taken lightly or continuously. We've seen that she has periods where she is very engaged and sharp and periods in which she is significantly more subdued. These periods seem to be very much driven by what's going on around her and the subject on which she is focused. For me, I'm most pleased that during periods when she is engaged, it's clear that her brain is still very capable of doing many of the things she'd need to do to maintain a good quality of life. On the downside, I would have to say that her energy levels, physical strength, and motor skills are not where I'd hoped they'd be (though they have remained pretty consistent lately), had I known that she would have had a period where she had the upper hand versus the tumor (as she's had over the past few months). Unfortunately, these have significant negative impacts on her quality of life from a day to day perspective. I guess, in sum, things could of course be better, but they could also be a whole lot worse. In the end, most importantly, we are very lucky to have had, and to be able to expect to continue to have, real, high quality interaction with her.
So that's it. As conditions change or we pass through milestones, I'll continue to add posts to the blog. So, while a month between posts is a long time, keep in mind that down the road no news is more a reflection of not much change to the status quo than anything else.
Thank you all for the love and support you have and continue to provide to Mom, Dad, and all of us. I know I speak for my family when I say that we have all been amazed - truly truly amazed - at the extent to which friends and family have demonstrated their love and support.
Love to all,
Ted
Tuesday, August 3, 2010
08/03/10 - Update
Another update from Dad
"Yesterday's surgery.
All went well. Mom and Diane and I arrived at 9:30, and Mom was immediately processed in. The surgery began at 11:45 and lasted until 12:30. Mom was released at 3:30. The staff and accommodations and support were all superb - never had it better.
The titanium plate was removed and the plastic surgeon found that he had enough skin at the edge of the wound to close the gap without grafting from elsewhere, which is good news. Mom suffered no discomfort - she was out for the count. She is groggy but her spirits are good and she is dozing on the porch. She has some pain medicine to use if needed. She can resume her normal medications except for the sleeping pills, which should wait a day or two. She will see the plastic surgeon again on Wednesday for post op inspection. (We did not in fact see him after the surgery. We knew he had a full schedule, and I did not press the point because the staff was fully informed and much more forthcoming than he likely would have been.)
I will leave for DC tomorrow morning very early. Diane is in charge. Mamadou is here for heavy lifting as needed. I will return Thursday, or earlier if there are any problems.
Mom would love to hear from you tomorrow. She will probably be groggy until dawn.
Love, Dad"
Love, Ted
"Yesterday's surgery.
All went well. Mom and Diane and I arrived at 9:30, and Mom was immediately processed in. The surgery began at 11:45 and lasted until 12:30. Mom was released at 3:30. The staff and accommodations and support were all superb - never had it better.
The titanium plate was removed and the plastic surgeon found that he had enough skin at the edge of the wound to close the gap without grafting from elsewhere, which is good news. Mom suffered no discomfort - she was out for the count. She is groggy but her spirits are good and she is dozing on the porch. She has some pain medicine to use if needed. She can resume her normal medications except for the sleeping pills, which should wait a day or two. She will see the plastic surgeon again on Wednesday for post op inspection. (We did not in fact see him after the surgery. We knew he had a full schedule, and I did not press the point because the staff was fully informed and much more forthcoming than he likely would have been.)
I will leave for DC tomorrow morning very early. Diane is in charge. Mamadou is here for heavy lifting as needed. I will return Thursday, or earlier if there are any problems.
Mom would love to hear from you tomorrow. She will probably be groggy until dawn.
Love, Dad"
Love, Ted
Thursday, July 29, 2010
07/28/10 - Update
Another update from Dad
"The plastic surgeon was more personable today. We had a short but informative session with him. He examined the hole and pronounced it "unchanged" (which I now think is good news, because it means that surgery can proceed). Mom was pleased to hear that her brain surgeon will also be on hand on Monday.
The surgery is scheduled for noon (August 2) at the hospital. If all goes well, and the plastic surgeon was quite sure it would, she will be released back home during the afternoon. There is no particular post-op ritual except changing the bandage and probably a visit back to the doctor a week or so later. The plastic surgeon did say that the aperture is large so that it will take some time for the wound to heal. I do not know what this might mean in terms of resumption of the Avastin treatment, but we will worry about that agenda down the road.
We were out of the office by nine thirty and Mom was home and back in bed at ten, and she went to sleep immediately.
We had some old friends for lunch yesterday and it was about the most pleasurable time Mom has had in a long time. She was quite sprightly. She did not take a nap yesterday and we watched the conclusion of the Adams PBS DVD last night. Mom woke a couple of times but in general slept until seven this morning.
Love, Dad"
Love to all,
Ted
"The plastic surgeon was more personable today. We had a short but informative session with him. He examined the hole and pronounced it "unchanged" (which I now think is good news, because it means that surgery can proceed). Mom was pleased to hear that her brain surgeon will also be on hand on Monday.
The surgery is scheduled for noon (August 2) at the hospital. If all goes well, and the plastic surgeon was quite sure it would, she will be released back home during the afternoon. There is no particular post-op ritual except changing the bandage and probably a visit back to the doctor a week or so later. The plastic surgeon did say that the aperture is large so that it will take some time for the wound to heal. I do not know what this might mean in terms of resumption of the Avastin treatment, but we will worry about that agenda down the road.
We were out of the office by nine thirty and Mom was home and back in bed at ten, and she went to sleep immediately.
We had some old friends for lunch yesterday and it was about the most pleasurable time Mom has had in a long time. She was quite sprightly. She did not take a nap yesterday and we watched the conclusion of the Adams PBS DVD last night. Mom woke a couple of times but in general slept until seven this morning.
Love, Dad"
Love to all,
Ted
Monday, July 26, 2010
7/26/10 - Update
Another one from Dad
"It is eight-thirty on Monday morning as I start this. Mom has not slept well the last three nights but every morning has compensated by getting about three hours of extra sleep. This has allowed her to declare that she got a good night's sleep. (Not so easy a declaration for the master caregiver!).
Mom has eaten well, and is comfortable. I find her physically weaker, but only marginally so (although yesterday when we went to the Great Smokies she had trouble walking short distances inside the restaurant in Morganton). She speaks very slowly, pauses from time to time to find the right word or to reconnect with a train of thought, and her voice level is often so low that it is hard to follow. And yet yesterday evening, when friends brought a delicious dinner (much appreciated in this ferocious heat) she perked up and seemed much stronger.
We are scheduled to have a pre-op on Wednesday for plastic surgery the following Monday (August 2). We hope to be clued in on Wednesday as to what the procedure will be. The wound has remained clean and the perimeter of the inflamed area has very, very gradually contracted each day. We seem to have a system in place whereby the headband apparatus remains secure during the night.
Mom has tried to be more active in the kitchen, and has succeeded. But she is very easily frustrated because her left hand is of very little use. I think it is more swollen now than was the case a couple of weeks ago, and I will spend more time massaging it this week. We have gotten out each day to go shopping and to get some walking in an air conditioned environment. Mom particularly enjoys a rural market-farm place, and we are eating very healthily as a result. The outdoor temperatures have stayed pretty close to, or above, 100 degrees for almost two weeks.
Please do call - late afternoon is the best. Love, Dad"
Love to all, Ted
"It is eight-thirty on Monday morning as I start this. Mom has not slept well the last three nights but every morning has compensated by getting about three hours of extra sleep. This has allowed her to declare that she got a good night's sleep. (Not so easy a declaration for the master caregiver!).
Mom has eaten well, and is comfortable. I find her physically weaker, but only marginally so (although yesterday when we went to the Great Smokies she had trouble walking short distances inside the restaurant in Morganton). She speaks very slowly, pauses from time to time to find the right word or to reconnect with a train of thought, and her voice level is often so low that it is hard to follow. And yet yesterday evening, when friends brought a delicious dinner (much appreciated in this ferocious heat) she perked up and seemed much stronger.
We are scheduled to have a pre-op on Wednesday for plastic surgery the following Monday (August 2). We hope to be clued in on Wednesday as to what the procedure will be. The wound has remained clean and the perimeter of the inflamed area has very, very gradually contracted each day. We seem to have a system in place whereby the headband apparatus remains secure during the night.
Mom has tried to be more active in the kitchen, and has succeeded. But she is very easily frustrated because her left hand is of very little use. I think it is more swollen now than was the case a couple of weeks ago, and I will spend more time massaging it this week. We have gotten out each day to go shopping and to get some walking in an air conditioned environment. Mom particularly enjoys a rural market-farm place, and we are eating very healthily as a result. The outdoor temperatures have stayed pretty close to, or above, 100 degrees for almost two weeks.
Please do call - late afternoon is the best. Love, Dad"
Love to all, Ted
Wednesday, June 30, 2010
6/30/10 - Update
From Dad. . .
Yesterday was arguably the best day Mom has had since the seizures in Chicago on August 17 of last year. We learned from Duke doctors that the tumor had contracted quite dramatically under the Avastin rubric. This was very good news to Mom after 10 months of unrelenting downside news.
This good news has been purchased at a certain cost. The Avastin is very aggressive - especially on certain targets, of which Mom is one. Doctors say she is one out of eighty who is very vulnerable to having Avastin attack healthy tissue and thus prompt infections. This has occurred. It can be fixed, but it is not something to be taken lightly. Mom will have to have a cleaning out of the infection, followed by plastic surgery. Mom in her euphoria (and it almost escaped me) may have to be in the hospital for a couple of days. It does mean that there can be no more Avastin for Mom until the infection is cleared out - which probably means the end of August. But this is not a severe crimp, because there is no big target to focus on re cell growth at this point.
Dr. V reminded us very obliquely that we were not looking at a cure.
All of this took place in the context that mom continues to be quite weak and has been in significant discomfort.
Love to all. Ted
Yesterday was arguably the best day Mom has had since the seizures in Chicago on August 17 of last year. We learned from Duke doctors that the tumor had contracted quite dramatically under the Avastin rubric. This was very good news to Mom after 10 months of unrelenting downside news.
This good news has been purchased at a certain cost. The Avastin is very aggressive - especially on certain targets, of which Mom is one. Doctors say she is one out of eighty who is very vulnerable to having Avastin attack healthy tissue and thus prompt infections. This has occurred. It can be fixed, but it is not something to be taken lightly. Mom will have to have a cleaning out of the infection, followed by plastic surgery. Mom in her euphoria (and it almost escaped me) may have to be in the hospital for a couple of days. It does mean that there can be no more Avastin for Mom until the infection is cleared out - which probably means the end of August. But this is not a severe crimp, because there is no big target to focus on re cell growth at this point.
Dr. V reminded us very obliquely that we were not looking at a cure.
All of this took place in the context that mom continues to be quite weak and has been in significant discomfort.
Love to all. Ted
Thursday, June 24, 2010
6/24/10 - Update
Another update from Dad, with some edits for privacy and content. . .
Anne was on call over the last few days while I dashed to Washington for a few days.
Mom and I will leave for Sanderling later this morning. Anne left last evening soon after I returned from DC and after Mom's appointments with doctors and nurses and others concluded. Mom slept quite well last night, good news in light of our determination to make the trip to the coast.
Last Friday morning I noticed a small infection along the line of the incision remaining from brain surgery last winter. The infection grew rapidly, and a rash spread down the side of Mom's face. When the medical community opened for business we contacted Mom's quarterbacking doctor, and her marvelous assistant swung into action. By mid-day we were at the surgeon's office, where Mom was issued a strong prescription to counter the infection. (But to my surprise we were told not to cover the infection or apply topical medicine; later we came to realize that was probably bad advice.) The infection receded a bit over the week-end. Anne and Josh arrived Saturday, and on Sunday afternoon I left for Washington under the universal impression that Mom would have chemo prep on Monday and chemo on Tuesday.
Not so quick! On Monday morning Anne noted that the infection had opened wide and that the plate installed over the brain cavity was exposed (titanium plate, I think). At the surgeon's office the wound was cleaned, topical medicine applied, test done (as previously scheduled). The tests revealed (thankfully) that the infection did not involve the bone (per se). Mid-morning in Washington I got a call from Duke saying that because the wound was open no chemo would be administered on Tuesday. Mom was of course distressed because no word of this had surfaced when we got involved with the infection treatment the previous Friday. The doctor's assistant weighed in to provide a level of comfort: Avastin's properties fight against healing and thus chemo had to be suspended, and the problem Mom faced was not all that uncommon. This calmed Mom down a bit, and with Anne as hall monitor Mom's attitude focused more clearly.
On Tuesday we were told that Mom would require plastic surgery to fill the gap, but that this would be scheduled for next week. Meanwhile the appointment at Duke was confirmed (we think) for next Tuesday, June 29th. Mom saw the surgeon's associate yesterday (Wednesday) and more medicine was prescribed and topical treatment as well (which perhaps could have been started the previous Friday). Mom now sports a large bandage which we will change again this morning.
The game plan is to get ourselves in gear and to head for the beach in easy stages and to join Anne and Josh and Asher late today. Mom really wants to go and I think it will help a great deal.
Chemo will resume, we assume, when the current infection is contained and the wound is closed.
Love to all. (We will go from the beach right to Duke on Tuesday, and then right home, because Mom has appointments scheduled for next Wednesday here in Charlotte.
Dad
Anne was on call over the last few days while I dashed to Washington for a few days.
Mom and I will leave for Sanderling later this morning. Anne left last evening soon after I returned from DC and after Mom's appointments with doctors and nurses and others concluded. Mom slept quite well last night, good news in light of our determination to make the trip to the coast.
Last Friday morning I noticed a small infection along the line of the incision remaining from brain surgery last winter. The infection grew rapidly, and a rash spread down the side of Mom's face. When the medical community opened for business we contacted Mom's quarterbacking doctor, and her marvelous assistant swung into action. By mid-day we were at the surgeon's office, where Mom was issued a strong prescription to counter the infection. (But to my surprise we were told not to cover the infection or apply topical medicine; later we came to realize that was probably bad advice.) The infection receded a bit over the week-end. Anne and Josh arrived Saturday, and on Sunday afternoon I left for Washington under the universal impression that Mom would have chemo prep on Monday and chemo on Tuesday.
Not so quick! On Monday morning Anne noted that the infection had opened wide and that the plate installed over the brain cavity was exposed (titanium plate, I think). At the surgeon's office the wound was cleaned, topical medicine applied, test done (as previously scheduled). The tests revealed (thankfully) that the infection did not involve the bone (per se). Mid-morning in Washington I got a call from Duke saying that because the wound was open no chemo would be administered on Tuesday. Mom was of course distressed because no word of this had surfaced when we got involved with the infection treatment the previous Friday. The doctor's assistant weighed in to provide a level of comfort: Avastin's properties fight against healing and thus chemo had to be suspended, and the problem Mom faced was not all that uncommon. This calmed Mom down a bit, and with Anne as hall monitor Mom's attitude focused more clearly.
On Tuesday we were told that Mom would require plastic surgery to fill the gap, but that this would be scheduled for next week. Meanwhile the appointment at Duke was confirmed (we think) for next Tuesday, June 29th. Mom saw the surgeon's associate yesterday (Wednesday) and more medicine was prescribed and topical treatment as well (which perhaps could have been started the previous Friday). Mom now sports a large bandage which we will change again this morning.
The game plan is to get ourselves in gear and to head for the beach in easy stages and to join Anne and Josh and Asher late today. Mom really wants to go and I think it will help a great deal.
Chemo will resume, we assume, when the current infection is contained and the wound is closed.
Love to all. (We will go from the beach right to Duke on Tuesday, and then right home, because Mom has appointments scheduled for next Wednesday here in Charlotte.
Dad
Wednesday, June 9, 2010
6/9/10 - Update
Figured I'd cut and paste from an update from Dad. . .
Mom was buoyed by the results of her blood tests Tuesday morning - the numbers were right on target. She was rewarded with six hours of chemo, which she took well. She slept well (7.5 hours) Monday night, which was also a plus. So she felt good today.
Tuesday night she walked all the way to neighbors and we had a most enjoyable dinner. They have been so good to us.
It was great having Tom here. Mom wished he could stay much longer, as do I. Love Dad
Mom was buoyed by the results of her blood tests Tuesday morning - the numbers were right on target. She was rewarded with six hours of chemo, which she took well. She slept well (7.5 hours) Monday night, which was also a plus. So she felt good today.
Tuesday night she walked all the way to neighbors and we had a most enjoyable dinner. They have been so good to us.
It was great having Tom here. Mom wished he could stay much longer, as do I. Love Dad
Tuesday, May 25, 2010
5/25/10 - Update
Mom's chemo treatment today came and went uneventfully, and mom now watching the news. How she can layer today's news (or any period's, for that matter) on top of what she's going through is beyond me, but she stays true to her routine! Next chemo treatment is scheduled for June 8th.
Nice evening here in Charlotte. Possibly the calm before the storm, unfortunately, as her nights are often long. But I optimistically approach every night as though it will be filled with sleep, and let come what may!
That's it. Love to all, Ted.
Nice evening here in Charlotte. Possibly the calm before the storm, unfortunately, as her nights are often long. But I optimistically approach every night as though it will be filled with sleep, and let come what may!
That's it. Love to all, Ted.
Monday, May 24, 2010
5/24/10 - Update
Monday afternoon - Ted in Charlotte with friend of the family Agnes. Dad has headed off to DC, back Thursday night.
Mom received some good news today when she learned that her blood "plats" were sufficiently strong to allow her to proceed with the chemo treatment they had to postpone last week. So tomorrow we ride - er, drive - to the clinic where she'll spend 5 hours getting infusion therapy. I guess it's saying something when that's a "good thing", but it is what it is.
That's about it for now. I'll provide an update tomorrow after the infusion.
Love to all, Ted
Mom received some good news today when she learned that her blood "plats" were sufficiently strong to allow her to proceed with the chemo treatment they had to postpone last week. So tomorrow we ride - er, drive - to the clinic where she'll spend 5 hours getting infusion therapy. I guess it's saying something when that's a "good thing", but it is what it is.
That's about it for now. I'll provide an update tomorrow after the infusion.
Love to all, Ted
Wednesday, May 19, 2010
5/19/10 - Update
Kiernan in Charlotte at the moment. Friend Agnes arrives this week. I will arrive on Monday and stay until Friday afternoon.
Mom was supposed to have her second infusion treatment yesterday, but it has been delayed a week because her Absolute Neutropfil Count (ANC) was below the minimum acceptable level. She will receive immune system boosters daily this week until her next schedule infusion appointment on Tuesday the 25th.
Clearly not ideal, though we understand these levels fluctuate for a variety of reasons. We'll hope for the best next time through.
Her days are largely good if she slept well the previous evening, and tough if she did not. We continue to work to figure out how to best position her for a good night's sleep each night.
Love to all, Ted
Mom was supposed to have her second infusion treatment yesterday, but it has been delayed a week because her Absolute Neutropfil Count (ANC) was below the minimum acceptable level. She will receive immune system boosters daily this week until her next schedule infusion appointment on Tuesday the 25th.
Clearly not ideal, though we understand these levels fluctuate for a variety of reasons. We'll hope for the best next time through.
Her days are largely good if she slept well the previous evening, and tough if she did not. We continue to work to figure out how to best position her for a good night's sleep each night.
Love to all, Ted
Friday, May 14, 2010
beamatch.org
At the request of the family of a good friend of mom and dad's, I joined the bone marrow registry at www.beamatch.org. Your participation would be much appreciated. Love to all. Ted
Thursday, May 13, 2010
5/13/10 - Update
I spent the past 3 days with Mom and Justin in NC. When I got there mom was quite weak, presumably from the intensive chemo treatment she went through last Tuesday the 5th. As my time there passed, she seemed to gain some strength and her mental acuity remained good. She continues to struggle with not sleeping as well as she would like, although she does get a lot of sleep during the days as well.
Not that much to report, except that my sense is that our "worst fears", that she had begun a rapid descent, do not appear to be the case, and rather that her extreme lethargy observed in the middle and latter part of last week were due in large part to the treatment.
She undergoes another treatment on the 19th. Hopefully she will continue to gain strength before then. An occupational therapist should visit the house shortly and we hope she'll be able to regain some use of her left arm.
Anyway, that's about it. Love to all, Ted.
Not that much to report, except that my sense is that our "worst fears", that she had begun a rapid descent, do not appear to be the case, and rather that her extreme lethargy observed in the middle and latter part of last week were due in large part to the treatment.
She undergoes another treatment on the 19th. Hopefully she will continue to gain strength before then. An occupational therapist should visit the house shortly and we hope she'll be able to regain some use of her left arm.
Anyway, that's about it. Love to all, Ted.
Thursday, April 29, 2010
4/29/10 - Update
In sum, Mom very happy with decision to consider Duke's clinical trial program. Given the level of uncertainty we regularly face as we navigate this process, this is of course all we can hope for.
She will start the treatment on Tuesday May 4th.
When all is said and done, we will have a lot of people to thank for their help along the way. For helping guide us through this particular step, the medical staff at Northwestern, who were willing to speak candidly with us and vouch for the quality of the Duke program, deserve special recognition.
She will start the treatment on Tuesday May 4th.
When all is said and done, we will have a lot of people to thank for their help along the way. For helping guide us through this particular step, the medical staff at Northwestern, who were willing to speak candidly with us and vouch for the quality of the Duke program, deserve special recognition.
Tuesday, April 27, 2010
4/27/10 - Day at Duke for Clinical Trial Evaluation
Long day for mom but a good one. She has been offered, and has accepted, the opportunity to participate in a clinical trial. Her treatment will be a combination of Avastin (bevacizumab), Camptosar (CPT11), and carboplatin. She will be treated every two weeks by her current doctor in Charlotte, who apparently interfaces regularly with the folks at Duke.
Most importantly, she feels very comfortable with the competence of the people and the direction of her treatment as outlined by the Duke staff. Tomorrow, another meeting at Duke to discuss the quality of life issues that will accompany the clinical trial program, and then presumably back home to Charlotte.
Best to all, Ted
Most importantly, she feels very comfortable with the competence of the people and the direction of her treatment as outlined by the Duke staff. Tomorrow, another meeting at Duke to discuss the quality of life issues that will accompany the clinical trial program, and then presumably back home to Charlotte.
Best to all, Ted
Monday, April 26, 2010
4/26/10 - Trip to Miami
By accounts from Dad, Mom and Dad had a wonderful trip to Miami to celebrate a sibling's wedding. . . shared invaluable time with all her brothers and sisters . . . thanks (and congratulations) to the newlyweds for allowing mom such an opportunity.
Friday, April 23, 2010
4/23/10 - Update
Learned last week that her tumor is growing after having been surgically "debulked" for the second time in mid February. Moving off current chemo regimen (Temodar) and on to either Avastin/Camptosar or a clinical trial.
Having a tough time using her left arm - unsure as to whether this is due to tumor activity, but certainly not an unreasonable assumption.
Appointment at Duke on Tuesday to be evaluated for possible clinical trials. If she is not accepted, or chooses not to participate, begins Avastin/Camptosar treatment on Thursday.
Having a tough time using her left arm - unsure as to whether this is due to tumor activity, but certainly not an unreasonable assumption.
Appointment at Duke on Tuesday to be evaluated for possible clinical trials. If she is not accepted, or chooses not to participate, begins Avastin/Camptosar treatment on Thursday.
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