Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 Welcome home Doris! Hugs nne Breast Cancer Patients Soul Mates for Lifehttp://www.geocities.com/chucky5741/breastcancerpatients.html Check out my breast cancer ornaments at:http://www.geocities.com/chucky5741/bcornament.htmlalso check out my other ornaments and lots of nice gifts at:http://www.cancerclub.com I'm home The surgery went well (Mickey keeps insisting it shouldn't be called surgery since they did not cut me but what does he know???) I was awake throughout the procedure since they don't put anyone except children to sleep for this kind of thing and it was awesome. I am writing it all down and will send it out to you later. It was wonderful also that they allowed Mickey, le and Debi (dtr-in-law) to be with me the entire time except when I was in the MRI machine and when they put me in the G. K. machine. They got to see it all. And they were given a tour of the facilities so they knew what was going on throughout. I would hope that anyone who is facing any type of brain surgery would check this out because it works for other problems other than the kind I had. I also recommend the LSU Health Science Center, Dr. Nanda and his associates and the LSU Hospital to anyone who needs medical care. It was great. I know too that the prayers that all of you said for me kept the doctor focused and able to do his job so well. Doris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 Welcome home Doris! Hugs nne Breast Cancer Patients Soul Mates for Lifehttp://www.geocities.com/chucky5741/breastcancerpatients.html Check out my breast cancer ornaments at:http://www.geocities.com/chucky5741/bcornament.htmlalso check out my other ornaments and lots of nice gifts at:http://www.cancerclub.com I'm home The surgery went well (Mickey keeps insisting it shouldn't be called surgery since they did not cut me but what does he know???) I was awake throughout the procedure since they don't put anyone except children to sleep for this kind of thing and it was awesome. I am writing it all down and will send it out to you later. It was wonderful also that they allowed Mickey, le and Debi (dtr-in-law) to be with me the entire time except when I was in the MRI machine and when they put me in the G. K. machine. They got to see it all. And they were given a tour of the facilities so they knew what was going on throughout. I would hope that anyone who is facing any type of brain surgery would check this out because it works for other problems other than the kind I had. I also recommend the LSU Health Science Center, Dr. Nanda and his associates and the LSU Hospital to anyone who needs medical care. It was great. I know too that the prayers that all of you said for me kept the doctor focused and able to do his job so well. Doris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2004 Report Share Posted September 15, 2004 ...........if you will, you'll be prepared. It's a de-tour, but maybe is better to be "organized". Comfort food in the refrigerator, funny hats, a list of telephone numbers of friends to whom you may have told already..."help me". And they will, beyond your imagination. For myself I have learn that God is not the author of fear. Fear comes from satan. As a child of God, I try not to harbor fear. So, I am "organized" : prayers, meditation, church....friends, chocolate, and this wonderful list with all the wonderful women in. Keep your optimism up.The journey has begun, but you drive the boat.......don't let it get lost at sea. Sea-storms and thunderstorms CANNOT stop you, but make you stronger, and wiser. Are you going to chemo? there is going to be nausea, and loss of hair, and rusty taste in your mouth, and creepy gray nails, and painful shots of stuff to raise your white cells, and follow ups. But you can do it. I did. Every woman did, here. And your hair will be back, so your appetite, and your strength. And you will be different inside. Better. But that is the sweet surprise I don't want to spoil. You'll find out, during and at the end of the journey. In the mean time, be strong. The sooner, the better. Go for it girl, it's for your own good. We understand you, and love you. Came back to up date us. We have been there, so we know. Hey! God is pointing the safe shore at the horizon, can you see it? Can you see us on the shore calling you? yelling at you " com'on girl! we are waiting for ya!! "....can you? Lucilla So I amoptimistic today, even though I'm still not looking forward to therest of the journey.Lynn__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2004 Report Share Posted September 15, 2004 ...........if you will, you'll be prepared. It's a de-tour, but maybe is better to be "organized". Comfort food in the refrigerator, funny hats, a list of telephone numbers of friends to whom you may have told already..."help me". And they will, beyond your imagination. For myself I have learn that God is not the author of fear. Fear comes from satan. As a child of God, I try not to harbor fear. So, I am "organized" : prayers, meditation, church....friends, chocolate, and this wonderful list with all the wonderful women in. Keep your optimism up.The journey has begun, but you drive the boat.......don't let it get lost at sea. Sea-storms and thunderstorms CANNOT stop you, but make you stronger, and wiser. Are you going to chemo? there is going to be nausea, and loss of hair, and rusty taste in your mouth, and creepy gray nails, and painful shots of stuff to raise your white cells, and follow ups. But you can do it. I did. Every woman did, here. And your hair will be back, so your appetite, and your strength. And you will be different inside. Better. But that is the sweet surprise I don't want to spoil. You'll find out, during and at the end of the journey. In the mean time, be strong. The sooner, the better. Go for it girl, it's for your own good. We understand you, and love you. Came back to up date us. We have been there, so we know. Hey! God is pointing the safe shore at the horizon, can you see it? Can you see us on the shore calling you? yelling at you " com'on girl! we are waiting for ya!! "....can you? Lucilla So I amoptimistic today, even though I'm still not looking forward to therest of the journey.Lynn__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2004 Report Share Posted September 15, 2004 ...........if you will, you'll be prepared. It's a de-tour, but maybe is better to be "organized". Comfort food in the refrigerator, funny hats, a list of telephone numbers of friends to whom you may have told already..."help me". And they will, beyond your imagination. For myself I have learn that God is not the author of fear. Fear comes from satan. As a child of God, I try not to harbor fear. So, I am "organized" : prayers, meditation, church....friends, chocolate, and this wonderful list with all the wonderful women in. Keep your optimism up.The journey has begun, but you drive the boat.......don't let it get lost at sea. Sea-storms and thunderstorms CANNOT stop you, but make you stronger, and wiser. Are you going to chemo? there is going to be nausea, and loss of hair, and rusty taste in your mouth, and creepy gray nails, and painful shots of stuff to raise your white cells, and follow ups. But you can do it. I did. Every woman did, here. And your hair will be back, so your appetite, and your strength. And you will be different inside. Better. But that is the sweet surprise I don't want to spoil. You'll find out, during and at the end of the journey. In the mean time, be strong. The sooner, the better. Go for it girl, it's for your own good. We understand you, and love you. Came back to up date us. We have been there, so we know. Hey! God is pointing the safe shore at the horizon, can you see it? Can you see us on the shore calling you? yelling at you " com'on girl! we are waiting for ya!! "....can you? Lucilla So I amoptimistic today, even though I'm still not looking forward to therest of the journey.Lynn__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2004 Report Share Posted September 15, 2004 Lynn, Im so happy you did so well.......and so relieved it isn't deeper.....TG for that. You too Lynn are in my thoughts and prayers....so happy for you. BIGGGGGGGGGGGG HUG Judy -- I'm Home Well, I survived my surgery yesterday. The surgery went well and Inever had any reaction to anesthesia so I was able to go home.The Dr removed 6 nodes for testing, but said they looked normal. Ofcourse the tests could say something different, but at least that isencouraging. It was more a partial mast. than a lumpectomy. Becausethe lump was behind and under the nipple, that was also removed. Sobasically the whole end of the breast. Guess I'll have to havereconstruction eventually. Pain isn't bad. Actually the incisionunder my are is what hurts the most. But tolerable. So I amoptimistic today, even though I'm still not looking forward to therest of the journey.Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2004 Report Share Posted September 15, 2004 Lynn, Im so happy you did so well.......and so relieved it isn't deeper.....TG for that. You too Lynn are in my thoughts and prayers....so happy for you. BIGGGGGGGGGGGG HUG Judy -- I'm Home Well, I survived my surgery yesterday. The surgery went well and Inever had any reaction to anesthesia so I was able to go home.The Dr removed 6 nodes for testing, but said they looked normal. Ofcourse the tests could say something different, but at least that isencouraging. It was more a partial mast. than a lumpectomy. Becausethe lump was behind and under the nipple, that was also removed. Sobasically the whole end of the breast. Guess I'll have to havereconstruction eventually. Pain isn't bad. Actually the incisionunder my are is what hurts the most. But tolerable. So I amoptimistic today, even though I'm still not looking forward to therest of the journey.Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2004 Report Share Posted September 15, 2004 Lynn, Im so happy you did so well.......and so relieved it isn't deeper.....TG for that. You too Lynn are in my thoughts and prayers....so happy for you. BIGGGGGGGGGGGG HUG Judy -- I'm Home Well, I survived my surgery yesterday. The surgery went well and Inever had any reaction to anesthesia so I was able to go home.The Dr removed 6 nodes for testing, but said they looked normal. Ofcourse the tests could say something different, but at least that isencouraging. It was more a partial mast. than a lumpectomy. Becausethe lump was behind and under the nipple, that was also removed. Sobasically the whole end of the breast. Guess I'll have to havereconstruction eventually. Pain isn't bad. Actually the incisionunder my are is what hurts the most. But tolerable. So I amoptimistic today, even though I'm still not looking forward to therest of the journey.Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2004 Report Share Posted September 15, 2004 Lynn, Thanks for letting us know. Continued prayers for you. Hugs nne Breast Cancer Patients Soul Mates for Life http://www.geocities.com/chucky5741/breastcancerpatients.html Check out my breast cancer ornaments at: http://www.geocities.com/chucky5741/bcornament.html also check out my other ornaments and lots of nice gifts at: http://www.cancerclub.com I'm Home > Well, I survived my surgery yesterday. The surgery went well and I > never had any reaction to anesthesia so I was able to go home. > > The Dr removed 6 nodes for testing, but said they looked normal. Of > course the tests could say something different, but at least that is > encouraging. It was more a partial mast. than a lumpectomy. Because > the lump was behind and under the nipple, that was also removed. So > basically the whole end of the breast. Guess I'll have to have > reconstruction eventually. Pain isn't bad. Actually the incision > under my are is what hurts the most. But tolerable. So I am > optimistic today, even though I'm still not looking forward to the > rest of the journey. > > Lynn > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2004 Report Share Posted September 15, 2004 Lynn, Thanks for letting us know. Continued prayers for you. Hugs nne Breast Cancer Patients Soul Mates for Life http://www.geocities.com/chucky5741/breastcancerpatients.html Check out my breast cancer ornaments at: http://www.geocities.com/chucky5741/bcornament.html also check out my other ornaments and lots of nice gifts at: http://www.cancerclub.com I'm Home > Well, I survived my surgery yesterday. The surgery went well and I > never had any reaction to anesthesia so I was able to go home. > > The Dr removed 6 nodes for testing, but said they looked normal. Of > course the tests could say something different, but at least that is > encouraging. It was more a partial mast. than a lumpectomy. Because > the lump was behind and under the nipple, that was also removed. So > basically the whole end of the breast. Guess I'll have to have > reconstruction eventually. Pain isn't bad. Actually the incision > under my are is what hurts the most. But tolerable. So I am > optimistic today, even though I'm still not looking forward to the > rest of the journey. > > Lynn > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2004 Report Share Posted September 15, 2004 Oh no - THANK YOU ALL - for the encouragement, the examples, the prayers etc. It has all helped so much. I had no idea what to expect, and although I am still afraid of the whole thing, I am much less so now. You are all angels. Lynn > Lynn, > Thanks for letting us know. Continued prayers for you. > Hugs > nne > Breast Cancer Patients Soul Mates for Life > http://www.geocities.com/chucky5741/breastcancerpatients.html > > Check out my breast cancer ornaments at: > http://www.geocities.com/chucky5741/bcornament.html > also check out my other ornaments and lots of nice gifts at: > http://www.cancerclub.com > I'm Home > > > > Well, I survived my surgery yesterday. The surgery went well and I > > never had any reaction to anesthesia so I was able to go home. > > > > The Dr removed 6 nodes for testing, but said they looked normal. Of > > course the tests could say something different, but at least that is > > encouraging. It was more a partial mast. than a lumpectomy. Because > > the lump was behind and under the nipple, that was also removed. So > > basically the whole end of the breast. Guess I'll have to have > > reconstruction eventually. Pain isn't bad. Actually the incision > > under my are is what hurts the most. But tolerable. So I am > > optimistic today, even though I'm still not looking forward to the > > rest of the journey. > > > > Lynn > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2007 Report Share Posted September 3, 2007 I'm home from my week trip to the NIH for my year follow up in the HPS Pirfenidone trial. Boy did I have a great week! I can't stop smiling. I went for the drug trial evaluation when my FVC fell from 96 to 69 in about six months time. My DLCO was around 55 to 60. When I actually entered the trial, my FVC had gone up to 82 (These PFT machines seem to me to have a lot of variation institution to institution.) For the first time there was fibrosis evident on my CT scan, although very mild. So, I've been taking these capsules for a year now (obviously not sure if I'm on the drug or placebo). My FVC went up to 90 on my last two visits, and this time was at 94!!!!!!!!!! I'm practically dancing. The fibrosis on my CT scan has advanced slightly, but we're talking ever so slightly. The doctors declared it stable. My DLCO is still around 60, so essentially unchanged. I'm a little puzzled still about the six minute walk test. Because I had this film crew following me all week, I wasn't able to spend as much time going over test results as I'd have liked. Our nurse practitioner told me my six minute walk was fine - but I'm not sure. I watched the little monitor on my wrists and it went down to 82. He says it didn't go down much, but I think he's thinking of the one we did for the cameras. I wasn't walking as fast for that one because the guy with the camera was walking backwards in front of me. So, I only fell to 90 on that one. Next week when the rest of my test results come in, we'll chat on the phone and I'll clear that up. It does seem there's something weird going on with my immune system. My Crohn's is back, but mild, and my thyroid is all messed up - so those things help explain some of the massave fatigue I've had lately. tells me I didn't tell you guys about the film crew. The HPS Network has been working with a filmmaker at the Sanford Center for Bioethics for about a year now. They are making a film called "The Citizen Scientists." It's about how patient advocacy groups, especially ones for ultra rare orphan diseases, are helping to advance scientific research for the greater community, as well as for ourselves. They are following three disease groups - the HPS Network and two others. The HPS Network fits into the storyline because of our work with the NIH on Pirfenidone. Some of our members have been on Pirfenidone for as long as 10 years. So, that's why they were with me. They've filmed our conference. They didn't film, but they hung out with us at the American Thoracic Society. They've filmed in the Appell household, home to our "office." They've filmed , our president's daughter, at NIH, then me, and they're wrapping up by going to Puerto Rico to film our outreach there. Initially the film is only going to be 30 minutes and will be used to facilitate discussions in medical schools. But, they're hoping to use that film to raise enough money to do a much longer film for air on PBS. Everybody keep your fingers crossed! HPS could use the exposure, and so could PF. P.S. I had a talk with our researcher working on the pulmonary fibrosis biomarker. He's had some exciting results with HPS patients and is now comparing with IPF patients - he thinks he'll at least have an abstract published soon. When he does, I'll pass it along. We also got to visit Dr. Gahl's (the HPS primary investigator) lab at the NIH. That was kind of neat - I posted some pics on my blog. And, as far as the life expectancy issue goes - five years ago this week I was told I had five years, maybe seven if I was lucky. And, 14 years ago my parents were told it was very unlikely I'd survive my bowel surgery, that the chances were I'd bleed out during surgery (because of the bleeding problems with HPS.) My family even made plans with the funeral home, bought a plot etc. Here I am! www.heatherkirkwood.blogspot.com Hermansky-Pudlak Syndrome albinism/PF 06 Quote Link to comment Share on other sites More sharing options...
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