Comments on: Post a Note to Bob http://bobmassie.org Thu, 24 Jun 2010 16:02:00 +0000 hourly 1 http://wordpress.com/ By: Kathy Cheek http://bobmassie.org/notes/#comment-385 Kathy Cheek Thu, 24 Jun 2010 16:02:00 +0000 http://bobmassiehealth.wordpress.com/?page_id=481#comment-385 Good Grief! I am now thoroughly caught up w/your blogs, family, and medical issues. You are a truly amazing man. Good Grief! I am now thoroughly caught up w/your blogs, family, and medical issues. You are a truly amazing man.

]]> By: vitty O'Toole http://bobmassie.org/notes/#comment-352 vitty O'Toole Wed, 05 May 2010 02:21:02 +0000 http://bobmassiehealth.wordpress.com/?page_id=481#comment-352 I just thought I'd check up on "Bobby" Massie online, and little did I know there was a lot of catching up to do. We first met in the Marais in Paris, where we were visiting and you were living. You were in the lycee. Bob and Tom O'Toole were friends at USA*1, while it lasted for 6 months in "62. Thereafter, we brought you down to a launch at the Cape, during your gap year before Princeton. You were adjusting to the reponsibility of your own health and dealing with the factoror on . your own You and our kids,Tom Owen,. Ellen and Peter liked having you along for the launch at the Cape. Computer eating this as I write. God bless you and strenghten your healing. I"m post cancer with its after "blessings". llove to all, Vitty O'Toole I just thought I’d check up on “Bobby” Massie online, and little did I know there was a lot of catching up to do. We first met in the Marais in Paris, where we were visiting and you were living. You were in the lycee. Bob and Tom O’Toole were friends at USA*1, while it lasted for 6 months in “62. Thereafter, we brought you down to a launch at the Cape, during your gap year before Princeton. You were adjusting to the reponsibility of your own health and dealing with the factoror on . your own You and our kids,Tom Owen,. Ellen and Peter liked having you along for the launch at the Cape. Computer eating this as I write. God bless you and strenghten your healing. I”m post cancer with its after “blessings”. llove to all, Vitty O’Toole

]]> By: boots d.magsuci http://bobmassie.org/notes/#comment-317 boots d.magsuci Sun, 14 Mar 2010 05:53:29 +0000 http://bobmassiehealth.wordpress.com/?page_id=481#comment-317 march 14,2010 1:36pm dear bob and anne, it has been years since i last read your parents book "Journey" and it has been one of my prized possession since i have been blessed with 3 sons with hemophila.it has been a great moral booster because everytime im almost to the point of giving up,i always try to remember one of the lines there that said "living with hemophilia is like climbing a glass wall,it is almost impossible to climb,but somehow we can"!now my sons are all grown up and my husband now gone,but we still look at hemophilia as a challenge and not a curse and still continue to appreciate all the smallest blessings that comes our way.now,ill be sharing your updates with my sons so that they will know that,yes theres hope for long and worthwhile life ahead for them and that they too can find someone like anne who will love them for who they really are.Godbless and continue to be a blessing for others. march 14,2010 1:36pm
dear bob and anne,
it has been years since i last read your parents book “Journey” and it has been one of my prized possession since i have been blessed with 3 sons with hemophila.it has been a great moral booster because everytime im almost to the point of giving up,i always try to remember one of the lines there that said “living with hemophilia is like climbing a glass wall,it is almost impossible to climb,but somehow we can”!now my sons are all grown up and my husband now gone,but we still look at hemophilia as a challenge and not a curse and still continue to appreciate all the smallest blessings that comes our way.now,ill be sharing your updates with my sons so that they will know that,yes theres hope for long and worthwhile life ahead for them and that they too can find someone like anne who will love them for who they really are.Godbless and continue to be a blessing for others.

]]> By: Judith White http://bobmassie.org/notes/#comment-226 Judith White Wed, 27 Jan 2010 22:33:54 +0000 http://bobmassiehealth.wordpress.com/?page_id=481#comment-226 Dear Bob, It was wonderful to receive your January 25th update at the six month point. Still some struggles, but oh so hopeful. To think of you again participating fully in the workforce, bringing he power of your many talents to bear is indeed a joyous thought for us all. Dear Bob, It was wonderful to receive your January 25th update at the six month point. Still some struggles, but oh so hopeful. To think of you again participating fully in the workforce, bringing he power of your many talents to bear is indeed a joyous thought for us all.

]]> By: Rachel Shimshak http://bobmassie.org/notes/#comment-220 Rachel Shimshak Sat, 19 Dec 2009 00:44:31 +0000 http://bobmassiehealth.wordpress.com/?page_id=481#comment-220 My dear Bob. I can still hear you playing the Virginia Reel at Congress Watch. I think of you often and wish you joy and peace in this holiday season. David and I are off to visit our son Max in Israel next week. We'll put a prayer in the Walll for you. Much love, Rachel My dear Bob. I can still hear you playing the Virginia Reel at Congress Watch. I think of you often and wish you joy and peace in this holiday season. David and I are off to visit our son Max in Israel next week. We’ll put a prayer in the Walll for you. Much love, Rachel

]]> By: Steve WIlson '79 http://bobmassie.org/notes/#comment-207 Steve WIlson '79 Fri, 27 Nov 2009 21:14:55 +0000 http://bobmassiehealth.wordpress.com/?page_id=481#comment-207 Bobbie, I was just reading about your remarkable battle on this website. I have not seen you since college, but have followed your fascinating career. Bravo to you for all you have accomplished, and even more for the heroic and powerful way you share this journey. I wish you well, and remember your leadership on apartheid long before many of us woke up. And everytime I picked up your father's book on Peter The Great in St. Petersburg (all last winter), I thought of you. I look forward to reading good news about your life and service. Best to you, Steve Wilson Bobbie,

I was just reading about your remarkable battle on this website. I have not seen you since college, but have followed your fascinating career. Bravo to you for all you have accomplished, and even more for the heroic and powerful way you share this journey. I wish you well, and remember your leadership on apartheid long before many of us woke up. And everytime I picked up your father’s book on Peter The Great in St. Petersburg (all last winter), I thought of you. I look forward to reading good news about your life and service. Best to you, Steve Wilson

]]> By: Bob http://bobmassie.org/notes/#comment-164 Bob Wed, 07 Oct 2009 18:59:28 +0000 http://bobmassiehealth.wordpress.com/?page_id=481#comment-164 yes, we have been watching telaprevir carefully. But it still may be years before it is approved for people like me (transplant, coinfection with HIV – thanks for thinking of it. yes, we have been watching telaprevir carefully. But it still may be years before it is approved for people like me (transplant, coinfection with HIV – thanks for thinking of it.

]]> By: Victoria Austin '75 http://bobmassie.org/notes/#comment-200 Victoria Austin '75 Thu, 01 Oct 2009 20:13:43 +0000 http://bobmassiehealth.wordpress.com/?page_id=481#comment-200 Dear Bob and Anne, You probably won't remember me. We knew each other slightly at Princeton. At that time, I was recovering from a near-death experience that eventually led me to an ordained life. Your enthusiasm for life was inspiring to me. Just read the PAW article about your liver transplant. I'm writing to say congratulations, thank you, and best wishes for the recovery process. Your life together helps and heals people everywhere. Deep appreciation, Victoria Dear Bob and Anne,

You probably won’t remember me. We knew each other slightly at Princeton. At that time, I was recovering from a near-death experience that eventually led me to an ordained life. Your enthusiasm for life was inspiring to me.

Just read the PAW article about your liver transplant. I’m writing to say congratulations, thank you, and best wishes for the recovery process. Your life together helps and heals people everywhere.

Deep appreciation,

Victoria

]]> By: Bear http://bobmassie.org/notes/#comment-141 Bear Mon, 21 Sep 2009 03:21:28 +0000 http://bobmassiehealth.wordpress.com/?page_id=481#comment-141 Bob, my good friend Dan B. mentioned you had Hep C; did you know about Telaprevir, the new med in phase 3 of clinical trials? Very promising, sometimes cure, or so Duke University claims: http://www.newsrx.com/health-articles/1509907.html -good luck,all the best, Bear (akallmes@yahoo.com) Bob, my good friend Dan B. mentioned you had Hep C; did you know about Telaprevir, the new med in phase 3 of clinical trials? Very promising, sometimes cure, or so Duke University claims:

http://www.newsrx.com/health-articles/1509907.html

-good luck,all the best, Bear (akallmes@yahoo.com)

]]> By: Kimberly http://bobmassie.org/notes/#comment-167 Kimberly Sun, 20 Sep 2009 19:05:38 +0000 http://bobmassiehealth.wordpress.com/?page_id=481#comment-167 I was more interested in finding you, and inquiring about your health, than going on about myself. However, during the dark hours of long nights, I've been thinking that there are more connections. Perhaps you might have some good words to share along the medical front–especially since a MASSGEN physician is on my list of heroes. I was diagnosed four years ago with multiple sclerosis. However, nothing about it looks like that. So, this past March, as I sat in the waiting room to see my neurologist, I happened to pick up the magazine "Neurology Now". I almost fell over reading it. My symptoms are described perfectly, and it is NOT MS. Going back to the topic of "connections", Dr. Ann Oaklander at MASSGEN has identified 'Olney lesions' and the condition associated with it; CRPS (Chronic Repetitive Pain Syndrome). Formerly called 'mystery pain', Dr. Oaklander is the first to prove specific measures to analyze changes in neurologic cells, thereby the condition is now proven to be legitimate. Previously, people with 'mystery pain' were labeled psychotic, and worse. While it is helpful to know that my initial diagnosis is wrong, the secondary diagnosis is awful. My specific case is "brachial plexus injury via trauma". It is about as bad as it gets. Symptomatically, people may have a limb with such severe pain, they may resort to plunging the limb in a bucket of ice to numb it. My pain starts in the back of my head, down my neck, under the shoulder blade, and down my right arm to the fingers. Remember–I'm a musician! My Steinway is pretty dusty. As I write, I am waiting for copies of my medical records from two prestigious Philadelphia hospitals, so that I can forward them to Mayo Clinic. I do not know if I will be accepted there. Current treatment is with ketamine infusions–a drug well tolerated as an anesthetic. However, in Europe people are put into a coma and treated with high dosage, over time. In the US there are now clinical trials (don't we in the hemophilia community know about THAT) being conducted in 20 hospitals across the country. Mayo is one of them. All I can say is that except for my faith, I would not have lasted this long. Now, the pain is so intense, I'm feeling despair. My toes hurt so badly, it feels as though a small, wild animal is chewing on them. My fingers are both numb and have pins and needles. Nerve pain this intense is like having an abcessed tooth throughout the body, 24/7. During these sleepless years, the nights become longer. A lot of words, but I do understand the suffering and pain of others, firsthand. When you mentioned the challenges of the liver transplant, the recent hospital 'tune-up', and impending hepC therapy, I was again moved by the connections. You inspire me. Blessings, Kimberly I was more interested in finding you, and inquiring about your health, than going on about myself. However, during the dark hours of long nights, I’ve been thinking that there are more connections. Perhaps you might have some good words to share along the medical front–especially since a MASSGEN physician is on my list of heroes. I was diagnosed four years ago with multiple sclerosis. However, nothing about it looks like that. So, this past March, as I sat in the waiting room to see my neurologist, I happened to pick up the magazine “Neurology Now”. I almost fell over reading it. My symptoms are described perfectly, and it is NOT MS. Going back to the topic of “connections”, Dr. Ann Oaklander at MASSGEN has identified ‘Olney lesions’ and the condition associated with it; CRPS (Chronic Repetitive Pain Syndrome). Formerly called ‘mystery pain’, Dr. Oaklander is the first to prove specific measures to analyze changes in neurologic cells, thereby the condition is now proven to be legitimate. Previously, people with ‘mystery pain’ were labeled psychotic, and worse. While it is helpful to know that my initial diagnosis is wrong, the secondary diagnosis is awful. My specific case is “brachial plexus injury via trauma”. It is about as bad as it gets. Symptomatically, people may have a limb with such severe pain, they may resort to plunging the limb in a bucket of ice to numb it. My pain starts in the back of my head, down my neck, under the shoulder blade, and down my right arm to the fingers. Remember–I’m a musician! My Steinway is pretty dusty. As I write, I am waiting for copies of my medical records from two prestigious Philadelphia hospitals, so that I can forward them to Mayo Clinic. I do not know if I will be accepted there. Current treatment is with ketamine infusions–a drug well tolerated as an anesthetic. However, in Europe people are put into a coma and treated with high dosage, over time. In the US there are now clinical trials (don’t we in the hemophilia community know about THAT) being conducted in 20 hospitals across the country. Mayo is one of them. All I can say is that except for my faith, I would not have lasted this long. Now, the pain is so intense, I’m feeling despair. My toes hurt so badly, it feels as though a small, wild animal is chewing on them. My fingers are both numb and have pins and needles. Nerve pain this intense is like having an abcessed tooth throughout the body, 24/7. During these sleepless years, the nights become longer. A lot of words, but I do understand the suffering and pain of others, firsthand. When you mentioned the challenges of the liver transplant, the recent hospital ‘tune-up’, and impending hepC therapy, I was again moved by the connections. You inspire me. Blessings, Kimberly

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