"Mom was a strong and wonderful woman and wife. . . " - Dad 12/04/11
Well, it's been a year since Mom died, and about the only thing I've figured out about all this is that it's obvious the void she left is simply impossible to fill. Given her larger than life persona, I suppose this should be no surprise. . .
The family spent the day in touch and sharing some of our fonder memories of Mom, and we've heard from family and friends who all are joining us in missing her terribly. While we all miss her in our own ways, I will say that I for one really miss the conversations we had. She had a very special ability to steer conversation in meaningful and rewarding directions, and once we headed down those paths she was often there to, well, let's just say she was there to provide some guidance. Which reminds me of a couple of things I'm supposed to do . . . :)
So, to you, Mom, as well as those who loved you and continue to love you, I speak for my Dad, my brothers and my sisters as we say we love you and will always treasure you.
Ted
Monday, December 5, 2011
Tuesday, December 7, 2010
12/08/10 - Thoughts
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.
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.
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
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