Mark - North Calif Posted July 4, 2003 Share Posted July 4, 2003 Hi Everyone, I'm new to the site and simply want to share my experiences with NSCLC. I would like to exchange therapy information and results. First some background info: In April of 2001 I came down with what I thought was the worst case of flu possible, night sweats, fever, etc. Attending emergency room doc totally missed the shadow on the left lung and prescribed antibiotics. In Sept 2001, my cardioligist performed my 3rd Angioplasty (I've have a life-long history of cardiac problems, mostly caused by bad genes). Procedure was a success and I returned to work in two days. Ater one week, felt diminished lung capacity, coughing, etc. Went back to the emergency room, had another lung xray and discovered I now had lung cancer. Further tests revealed stage IA NSCLC. Lobe with tumor was removed surgically in Oct 2001 and I was declared cured. My case was followed up by my pulmanalogist. In Nov of 2002, CT scans showed multiple tumors in the remaining left lung and a tumor in the right lung. Bingo....I now have stage IV LC. Further needle biopsy confirmed diagnosis. All tumors are very small (less than 1cm). Currently I'm in the 2nd chemo cycle of CarboPlatin & Gemzar and also receive Anzemet with Decadron. Please be aware I am not complaining about the medical treatment I've received. For the most part, I have the best medical care possible (Physicians in the immediate family). I have read some of the threads on this posting and can relate to the patients who continue living life as almost nothing has happened. In my case, I now work 50 hour weeks instead of the normal 70 hours. My Oncologists have suggested taking it easy and doing what I have always wanted to do. The fact is I like my work and am doing what I enjoy (at least for now). I do travel a bit more with my adult daughters and plan to 'retire' in Europe sometime in the next year. I still ride my bike 10 miles in a session and have gained some weight due to the Steroids. Overall, I feel better today than I did two years ago, no coughing or any other bad side effects. Just wish Chemo was more effective for me. Tumor growth is arrested but I had hoped for more. I know I sleep much better than my daughters. I try to explain to them that I have lived a very full & wonderful life up to now and will do all in my power to continue living. That's the best I can do. Guilt, blame, sense of victimization, survivorship, all these terms have NO relevance for me. This is a disease like any other and needs to be faced head-on with no pschological impediments. The rest of the industrialized world deals this way with illness, why can't we? Quote Link to comment Share on other sites More sharing options...
Jenny G. Posted July 4, 2003 Share Posted July 4, 2003 Hi Mark, Welcome to the group. I love your attitude and agree with your philosophy. Thank you for sharing your story with us. Hope to hear more from you and you will find many supportive people who can relate to what you're going through. Best of luck Jenny Quote Link to comment Share on other sites More sharing options...
Rick Posted July 4, 2003 Share Posted July 4, 2003 Hello Mark and welcome to our family. I am sorry that we have to meet this way. I love reading of courage and drive as you definitely display!! Quote Link to comment Share on other sites More sharing options...
sharyn Posted July 4, 2003 Share Posted July 4, 2003 I am sensing a bit of a "criticism" from you regarding the way some of us choose to handle the diagnosis of lung cancer... I admire you for the way you have decided to handle your diagnosis, I also admire the way anyone else chooses to handle THEIR diagnosis... I don't think anyone on these boards feels "victimized" and if we talk about survivorship, thats because we are still fighting for lives here and not ready to surrender. If you have made peace with your diagnosis so be it... we have also made peace with ours...but, have decided to KICK BUTT for a little while and see if we can't stay around for a bit longer. I wish you well Mark. Sharon Quote Link to comment Share on other sites More sharing options...
Don Wood Posted July 4, 2003 Share Posted July 4, 2003 Hi, Mark, and welcome to the boards. Thanks for your story. It is great to see someone who is two years out from diagnosis. That is encouraging to us all. I have to also take issue with the attack on "survivor". If that doesn't work for you, fine, but it works for a lot of us. I am an almost 8 year survivor of prostate cancer and proud of it. Keep us posted on your journey. Lots of support and info here. Don Quote Link to comment Share on other sites More sharing options...
Terrie Posted July 4, 2003 Share Posted July 4, 2003 Hi Mark, and welcome! Glad to hear you are doing so much with your life and so well, too. Sounds like you are perfectly happy and content - however I don't think you should be judging those of us who are still dealing with the day to day trials of treatment or it's phycological effects. Perhaps having physicians in the immediate family have an impact on the way you look at the victimization/survivorship situation. May you have continued good health and mental outlook. Proud to be 'labeled' a survivor - Terrie Quote Link to comment Share on other sites More sharing options...
Mark - North Calif Posted July 5, 2003 Author Share Posted July 5, 2003 Thanks everyone for your reply. First, I want to say that I respect and appreciate the suffering and pain Cancer patients endure. It was not my intent to diminish that physical reality. I have experienced that first hand myself. What I wanted to do was separate what is a scientific and physical reality from the more abstract position. The use of the word survivor is NOT a scientific term but actually a marketing term introduced by psychologists who have no apparent means of actually curing or treating cancer. We are all patients and have to live with the statistics of the disease. That is the only point I wanted to make. Sorry if I offended anyone. BTW, in other regions of the world, Cancer patients actually live longer by dealing with the scientific reality. Regards, Mark Quote Link to comment Share on other sites More sharing options...
Debi Posted July 5, 2003 Share Posted July 5, 2003 Mark, I had seen your original post and chose not to respond yesterday. However, I am up this morning because I am in pain and felt the need to answer your last post. I'm not sure where you are coming from on the "survivor" angle. Here is Websters definition of survivor: to continue to function or prosper despite : WITHSTAND- sur·vi·vor /-'vI-v&r/ noun I would think that everyone on this board, including (or especially) caregivers, meet the above "criteria" without it being used as a "marketing" term by psychologists. When I look at my back in the mirror, I'm apalled and at the same time sort of grateful...I SURVIVED my operation and if I stay clear of cancer, I will have survived this disease. By saying that survivor is a marketing term, I feel that my trials so far (which compared to others here is small) are negated. Its as if I showed someone my scar (to me I look like a living autopsy) and they merely shrugged their shoulders, unimpressed. Scientific reality is fine...but it doesn't exactly move me. People here move me. People give you motivation to try to live (and music) . Guess I've always been a fan of Gloria Gaynor and her "I will survive". You can't even hum to scientific reality. Anyway, I'm not meaning to be argumentative..I found something almost bitter in your post..or resentful of the fact that people do consider themselves lung cancer survivors. Could be just me...have been having some bad days but don't really want to complain...there are alot of people suffering more than I am. Yesterday was difficult..my 4 year old woke up all hyped up about seeing fireworks...after my surgery, I wasn't well enough to take him to see them. Minor compared to most problems here; major for me. I wish you the best of luck Mark...hope I didn't bore you with my 6 am discourse!! Debi Quote Link to comment Share on other sites More sharing options...
teresag Posted July 5, 2003 Share Posted July 5, 2003 You can't even hum to scientific reality. Wonderful quote! Mind if I use it? Quote Link to comment Share on other sites More sharing options...
Mary Posted July 5, 2003 Share Posted July 5, 2003 Mark, I started reading the replies to your original message and couldn't understand what hit a nerve with some people so I re-read your post. I still did not find anything offensive in it. Welcome to you Mark. Mary Quote Link to comment Share on other sites More sharing options...
Donna G Posted July 6, 2003 Share Posted July 6, 2003 People are physical, emotional and spiritual. I vote we have to deal with all three. Our emotions and spiritual life affect our physical, this has been proved scientifically in double blind studies. We must deal with all three. We need peace of mind, happiness, joy, freedom from pain, hope, nutrition, all are needed. Don't neglect!! Quote Link to comment Share on other sites More sharing options...
Tiny Posted July 6, 2003 Share Posted July 6, 2003 Hello Mark, As you can see, people come to this Message Board for many different reasons, with a wide variance in ages, family responsibilities, and financial situations, and with many different points of view...all are welcome. We will not always agree, but in the end, we are supportive as we live and contend with this disease of lung cancer. Thank you for sharing your LC story with us. I feel all such information adds to our knowledge base pertaining to histories and subsequent treatments...we never know when such data may be useful to another person. I'm confident that you will be able to realize your desired outcome of exchanging therapy information and results. I look forward to future challenging posts from you! Be welcome. Quote Link to comment Share on other sites More sharing options...
Fay A. Posted July 7, 2003 Share Posted July 7, 2003 Welcome, Mark, though I'm sorry we meet under these circumstances. My name is Fay A., and I am an unapologetic Survivor of Lung Cancer and some of it's treatments -and "treators"-for the past 4 years, 1 month, and 5 days. The way I look at it is this: The statistics show that some people live a short period of time after a diagnosis of Lung Cancer. Some people live a very long time. It's my job to see to it that I fall into the Long Term Survivor catagory. For me, THIS IS where the science comes in. I was erroneously put at Stage I when first diagnosed. I was really Stage IV (long story with lots of drama- Surgeon refused to give me a referral to an Medical Oncologist; tumors removed, called benign when they were actually malignant, tumors left behind in surgery; None of this disclosed to me. Had to learn it 18 months after the fact.) So, here it is....2 full standard muscle sparing thoracotomies with removal of tumors in the upper and lower lobes of the right lung, 1 right anterior thoracoscopy, 2 mediastinoscopies, 8 Months on Iressa as part of a Clinical Trial, and a recent right Pneunomectomy, and I am alive. For the first time in at least 4 years I have No Evidence of Cancer in my body. I'm pretty happy about this. But I'm not resting. Post surgical chemo is coming up soon..I'm already looking for the next thing that is going to buy me more time when the BEAST returns. (Lung cancer is prevalent in my family among smokers and non smokers alike, so I'm pretty sure that in my case it IS going to turn up again ). This is where the Science comes in, too. It's good that you're enjoying your life as it is. You were smart to make your life's work what you enjoy most. That's what I keep telling my children to do. And having Physicians in the family is a blessing, but unless they are experts in the rapidly changing field of Oncology with a special interest in Lung Cancer it's maybe not such a great idea to let them treat you. Just my opinions...can't help it. I seem to have one about everything. Where in Europe will you retire? I lived in England, but spent more time in the Far East. Once again, welcome. Fay A. Quote Link to comment Share on other sites More sharing options...
David P Posted July 7, 2003 Share Posted July 7, 2003 I AM A SURVIVOR !!! Quote Link to comment Share on other sites More sharing options...
Debaroo Posted July 8, 2003 Share Posted July 8, 2003 Mark, welcome to the board and thank you for sharing your story. As far as the terms, I would be grateful if, in a year, or in several years-I were able to say that my dad is a longterm survivor of lung cancer. That being said, if that dosn't work for you, and dealing more in the scientific nature of things works for you in dealing with your disease-than thats what you should do. As the Beatles said "whatever gets you through the night, its alright-its alright...whatever gets you through the day, its ok, its ok." For me, if I weren't driven by my emotions-my love, my caring, my empathy and my passion for trying to find things that would make my dads journey one that enables him to not just live, but live a better quality of life...than I honestly think that my dad would not have done as well as he has in his, so far, year and one-half battle...and I feel that way about my family here on this message board. If I have some tidbit, or just my sharing emotional support somehow makes even one moment of someones life easier, or makes them laugh, or a shared experience makes some type of difference to them-as it surely has for me-than it makes this whole thing all the more bearable. I just think that at SOME point, emotions get involved for everyone. I think that you are right to see that you have been a lucky man, and I am glad that you can do it. If you ever need emotional support, we will be here. If you just want to share medical knowledge, we appreciate it...either way, you are welcome here, and since sharing knowledge is so crutial in this battle-we appreciate your input. But we also appreciate the prayers and support. Take care, and keep posting, Deb Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted July 9, 2003 Share Posted July 9, 2003 Welcome aboard Mark. You are correct in that cancer is a disease which needs a cure, I am going for a complete cure to my cancer and so far so good. Sounds like you are doing pretty well yourself, over 2 years out from diagnosis. CONGRATULATIONS!!!! Keep it up. David C Quote Link to comment Share on other sites More sharing options...
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