Guest KellyB Posted February 24, 2004 Share Posted February 24, 2004 Hello All. I have finally mustered up the courage to write. I have been reading and following along for about a year. So many of you are so truly inspiring and brave. My Dad age 58 was having knee surgery, in Jan 2003 when a presurgical test showed a spot on his lung. It was a 3cm nodule.The knee surgery was cancelled and we then went for ct and pet scans. No other spots were seen so they opted for a lobectomy of his middle lobe. The surgery done in 04/03 went well and the surgeon said all lymphnodes tested negative. We thought we were out of the woods. The Stage One was diagnosed. His first ct scan in 8/03 showed a change in the lymph nodes in the center of his chest. We were horrifed to be restaged to 3B. A needle biopsy and bronchoscope were inconclusive. We went for a 2nd opinion at Sloan Kettering and again nothing was confirmed. In Sept. the did another scope and found a tomor on his trachea which was malignant. He was then given another Pet scan and his lowere lobe "lit up" . We decided on chemo since radiation was never an option.(My father was a heavy 45 + year smoker and has very bad lungs.) He is also very overweight and it really limited our options and procedures. He started chemo in November:Carbo/Gemzar. He is very strong and handled the treatments with no side effects. However when a stent was put in his trachea prechemo, he caught a staph infection and it went undetected until this past month. He has chronic bronchitis and just got out of the hospital with pneumonia. While in the hospital a ct scan showed a new "spot " in ths same place as his lobectomy and a scope revealed new lesions in the trachea. At this point no cancer has showed up anywhere besides his respiratory system but the Dr. says he is now stage IV and not curable(I refuse to believe) . We are hoping for another chemo option and possible radiation on just trachea. But enough of the clinical history, I am here because I see all of the lovely people and their families stricken with this awful disease. My father is a wonderful person who loves his family and the thought of losing him terrifies me. I am the oldest of 4 children. I am 35 and my three daughters ages 9,5,3 see their Grandpa almost everyday. He babysits for me MWF. They are his whole world and the torture of watching him weep to think they won't remember him breaks my heart. My brother and sisters are very close and every step is a family affair. My Mom is the primary caregiver but we are always involved. We have my Dad on a vitamin therapy and we tirelessly research and learn. It seems as time goes by, we just keep getting more bad news. I try to be thankful we have dealt with this for a year and he is still here. I know I am going on and on , I do not see much about the trachea on this board but any pearls of wisdom would be greatly appreciated. I have Hope and prayers for everyone here and sometimes I wonder what life was like before all of this. It seems like forever since the diagnosis. Luckily, my father has a great upbeat personality and keeps it light. We laugh and share good times as often as possible and appreciate every minute together. In a weird way it is a gift to prioritize your life. We have Hope and look forward. My fathers doctors have all been compassionate and kind. Thank you for letting me be a part of your wonderful community and I appreciate any good thoughts ,prayers or wisdom. Peace and good health to you all. Kel Quote Link to comment Share on other sites More sharing options...
ginnyde Posted February 24, 2004 Share Posted February 24, 2004 Dear Kelly, I unfortunately have no help for you on the trachea. I just wanted to welcome you to this loving caring place. Someone will probably have more information to help you. I can tell you that I have gotten SO much information to assist my husband on this journey. Keep us posted. Ginny Quote Link to comment Share on other sites More sharing options...
Elaine Posted February 25, 2004 Share Posted February 25, 2004 I wish I could help you with your question about the trachea. What are his symptoms? Does he have a bad cough? I know the Drs. don't seem to say much about what is causing what. I often wonder why that is. But I am one to want to know and maybe they truly don't know, but I wonder. I am so sorry you have to be here but am glad you have found benefit in it over the last year. Your family sounds wonderful and I will keep you all in my thoughts and prayers. Elaine Quote Link to comment Share on other sites More sharing options...
Carla Posted February 25, 2004 Share Posted February 25, 2004 Wow. I am relatively new to this but your description of your dad (upbeat, positive) reminded me of mine. Of course you have all been through a lot more than we have (we just started and he hasn't even been staged yet, and I know that good news can easily be followed by unexpected bad) but I appreciate what you said about this making you prioritize. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted February 25, 2004 Share Posted February 25, 2004 Your dad is one lucky guy, with all the family support he is getting. And his positive attitude should serve him well. Hang in there, and keep us posted. Let us know how we may help you. Don Quote Link to comment Share on other sites More sharing options...
Andrea B. Posted February 25, 2004 Share Posted February 25, 2004 Kelly, I am so sorry you have to be here. It is so very scary dealing with lung cancer and the unknowns. I know how you feel about being so scared to lose your loved one. My mom too is very close to my daughter and used to care for her several days a week. I see the pain in my mom's eyes now that she is no longer able to care for her the way she used to do. But it is funny how this whole thing makes you focus on the priorities in life. Enjoy each day to the fullest. Not one of us knows how long we have and no doctor can tell us how long we have. My mom told she wouldn't make it out of the hospital at the end of December and she is doing better today. I will keep your dad in my prayers. I am sorry I don't have any answers about the trachea. Blessings to you and come here whenever you need support. Quote Link to comment Share on other sites More sharing options...
kaychloe23 Posted February 25, 2004 Share Posted February 25, 2004 Thank you to all who responded so tenderly to my message. Not long after posting my fathers oncologist called with the news that a tumor 10 cm in size was located in the exact spot where he had the surgery. The last ct scan was done in Oct. So it grew to that size in 4 months. I was so shocked I couldn't even cry. Today I woke up feeling angry. My parents are still positive and willing to fight. His Dr. wants to start chemo asap but I still do not know details. Again thank you to all who took time to send kind thoughts and words. Sometimes you feel like your family is all alone in this nightmare and the understanding of others really makes a difference. Peace and good health to all. KEl Quote Link to comment Share on other sites More sharing options...
karen335 Posted February 26, 2004 Share Posted February 26, 2004 Kelly, Your dad and family are in my prayers. Hang in there, I had Taxol/carboplatin chemo and radiation. The tumor was 17cm and shrunk about 80%. Keep the faith, our Lord hears and answers our prayers. We are here for you... God Bless Karen Quote Link to comment Share on other sites More sharing options...
pecola Posted February 26, 2004 Share Posted February 26, 2004 Hi, Kelly. I read your post and thought, "what a wonderful family"! I thought of myself when I read about your children. My Grandfather lost his battle to this nasty disease over 30 years ago when I was 9 years old. I loved him with all of my heart and he was the most important male figure in my life. 30 years later, the treatments and prognosis for this disease are so much better than then, so I know in my heart that you can expect him to be around to see them grow! But I wanted you and him to know that no matter what this disease does, it can NEVER take his grandchildren's memories of him away - never. I still think and dream of my papaw all the time and have so many beautiful memories. So much of who I am is because of him. My sister was 7 and my brother 4 and they both have great memories of him. You all are in my prayers tonight and I am fully expecting a miracle for your Dad. Gina Quote Link to comment Share on other sites More sharing options...
David P Posted February 26, 2004 Share Posted February 26, 2004 Hey Kelly. Hope all turns out for the best. I am a firm believer that a positive attitude is the best place to start with this thing. Knowledge and family support are a close second. And now that you're in this extended family numbering over 900 strong, you'll never be alone when it comes to questions, support, or prayers. Take care Kelly, and keep us posted. David P. Quote Link to comment Share on other sites More sharing options...
Donna G Posted February 26, 2004 Share Posted February 26, 2004 KellyB, Have you used the search engine? At the top of the page under LUNG CANCER MESSAGE BOARDS click on search, then type in " trachea" , then hit search, there are nearly 20 hits here on the board, perhaps that will help. Anyhow, please let me tell you- Welcome. Now keep us posted on his progress. Donna G Quote Link to comment Share on other sites More sharing options...
Jana_W Posted February 27, 2004 Share Posted February 27, 2004 Hi Kelly Nice to meet you and welcome. Reading your post reminded me so much of my family and what we are going thru. My Mum was diagnosed in August of last year, unfortunately her stage at diagnosis was a Stage IV. She has a tumour in her left upper lobe, positive mediastinal lymph nodes and some bone secondaries as well. My family are also very close and have been a great support to each other, and we also refuse to believe the prognosis of incurable. Really, how do they know that? They don't, so we don't have to accept it. The hurt your feel being scared about your children not remembering your Dad I can also relate to, as I am trying to get pregnant myself at the moment (I have no children) and I am devastated at the thought my children would never meet my Mum. I try not to think about that too much. I also relate to what you say about how life seems so different since the diagnosis, and I totally agree. I do so wish that I could wake up one morning and not have to think about the fact that my Mum has cancer. That would be wonderful. I have recommended to other people to research "Ian Gawler" on the internet.. Ian was given about two weeks to live by doctors and is alive 27 years later. He tried multitudes of different therapies and there is alot to be learned from him I believe. I hope you can look it up and find some information that may help your Dad. I will be thinking of you, your Dad and your family and hoping for some good news on the next scan. Jana xxxxx Quote Link to comment Share on other sites More sharing options...
Guest KellyB Posted February 27, 2004 Share Posted February 27, 2004 Thank you so much for all the responses and wishes, it is always comforting to receive such sincerity. A note of thanks for everyone's helpful info. I want to also say a special thanks to Gina, your message really carried me thru the next 2 days and was especially meaningful to me, I greatly appreciate your words. Also to Jena in th UK, I feel your pain and can relate to your every fear. Just this morning I called my Mom to check on things and she cried to me aplogizing for the pain and burden this was causing my siblings and I. Just hearing her words broke my heart. When you love your parents you would do anything. I bit my lip and told her we are a family and we are in this together. I will pray for all and hope to have more promising news soon. I will also start posting in the nslc/meso. board since that is where all the newest updates and info seem to be. Good health and prayers...Kel Quote Link to comment Share on other sites More sharing options...
norme Posted February 27, 2004 Share Posted February 27, 2004 Kelly, am so sorry this terrible disease has hit your father and all of the family. I only hope that the chemo loves him. This will be a long hard road to travel for your father and all the family. One day news is great and the next not so good. Someday they will find a way to be able to trace the cancer cells as they are traveling through the body to distant places. To me that is the key to all of this cancer. Get it while it is traveling and before it strikes another place. My grandchildren, 10, 7 and 3 are missing their grandfather now. I sure hope the two older ones remember him. He loved them so much as I know your father loves yours and any others he has. Quote Link to comment Share on other sites More sharing options...
Guest KellyB Posted February 27, 2004 Share Posted February 27, 2004 Norme, Thank you so much for your message, I was watching and wondering about Buddy for many months as I visited and read the posts. I am so sorry that he lost his battle. You are blessed to have spent a lifetime with your soulmate and his legacy lives on in your children and grandchildren. Most inspiring is the fact that even now you are still caring about others in the battle. Be well and thank you for your kind words. Kel Quote Link to comment Share on other sites More sharing options...
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