beckyg

Crossing my fingers for him! Becky

I appreciate everyone's input. I love that this board is so positive and that it's okay to express unpopular opinions here and get polite disagreement. I am trying hard not to fly off the handle in some strange smoker's face. I am so angry at this tumor sometimes I can't see straight. I am angry at the perception that lung cancer is a smoker's disease and smokers deserve what they get. Nobody deserves this. It's almost like the perception in the 80's that everyone who had AIDS was either gay or a drug user, so they deserved what they got. I focus my anger in some small way in spreading the news locally that this can affect anyone. People stare at my head when I go out. I am not ashamed or shy about telling them I have lung cancer and that I don't smoke and never have. A friend who is a free lance writer told me that my story would be of interest to national women's magazines and I am working on writing something up. Believe me, I know all about the randomness of cancer. I know about people who smoke 50 years or more and die of something totally unrelated to breathing. I also know how scared I am that my chemotherapy might not have worked. I want to shake and scream at my students who smoke, not because I think they are bad people or stupid people, but because they are bright, talented young people who have made a choice with so many bad implications and I don't want them to go through this. Shaking and screaming probably won't convince anyone, but I will continue to display my bald head and scars and tell everyone who stares. Becky

I agreee that we need to make more effort to get people to never start smoking. I have sympathy for the difficulty people have trying to quit--I have watched my dad try to quit over and over again over the years. I have a hard time understanding why anybody starts--maybe I just don't have the need to be cool that so many teenagers blame it on. To me, cigarettes smell bad and are associated with so many health risks that they were never appealing. I guess what my frustration and anger is doing is making me want to let the world know what lung cancer really looks like--not pictures of lungs like they show in high school health classes, but people struggling to breathe and being told "If we can get you five years, that will be a real success." I am angry that no matter how much information comes out about how harmful smoking is and that cigarette companies have been lying about how addictive they are, young people keep starting. I don't blame smokers for my cancer--nobody knows why I have it, and I don't blame people who started long ago and got addicted not knowing what they were doing to their bodies. But know we know and we all know here that it's a lie to say, "I am not hurting anyone but myself when I smoke." Lung cancer hurts entire families, not just in losing someone but in watching this disease make them suffer. So I am angry at teenagers and twenty-somethings who light up, and they're the ones I want to scream at. Maybe if I did they would dismiss me as a crazy lady, or maybe the sight of my bald head and huge scars would scare them into trying to quit. Who knows.

Before I start ranting ,let me say to all of you smokers and former smokers that I know you didn't ask for lung cancer any more than I did. I have always been irritated by the smell of cigarette smoke and especially by people who blow cigarette smoke in my face in public places. But until I found out I had lung cancer, the extent of my reaction was to glare at them and move away. Now I have an overwhelming desire, that so far I have suppressed, to launch into a violent diatribe when I see a smoker, especially a young one. This is a problem since I work on a college campus in East Texas and I see 18 and 19 year old smokers outside every building between classes. Thursday night my husband and I went to the movies and walked trough the parking lot behind a couple fo young men smoking. I wanted to rip their cigarettes out of their hands and yell at them (bald head and all) that I had THEIR lung cancer. I am just so angry--I did everything I was supposed to do. I avoided smoking, I exercised, I tried to eat right, and yet here I am, finally through with grad school, in a great job with a charming child and WHAM I have lung cancer. I hope those PET scan results come back soon and with good news--my mood swings are getting worse with this waiting! Becky

I had a small pleural effusion last week. They drained it for diagnostic purposes--the doctor said there was only about a half cup of fluid, but they do the same thing if there is a lot of fluid. They put some sort of numbing cream on my back and then used a sonogram to find the pocket of fluid. Then the radiologist took a needle and put it through my back into the pocket and then used a vacuum-sealed bottle to drain the fluid. I got a little dizzy and had to spend 15 minutes lying down afterward being supervised because my blood pressure went low, but after that I was fine. I didn't feel the needle--just pressure in a place I am not accustomed to feeling pressure. I don't know if it was psychological or if removing that little bit of fluid did help, but my cough seemed better afterward. Becky

I haven't tried gemzar, but my advice about cisplatin is this--be a wimp. By that I mean that if you feel the least little bit nauseous while you are in for treatment, complain and they will give you wonderful IV drugs that stop it in its tracks. When you come home, take your anti-nausea stuff even if you don't feel nauseated--by the time the nausea comes on, taking a pill won't help! My other advice is to enjoy your kids as much as possible--some days my little girl was the reason I dragged myself up and out the door for more treatment. I'll be thinking about you, and keep us posted. Becky

Cheryl, Hang in there. I am in the same boat you are. I was in for surgery in February, and they found cancer in my mediastinal lymph nodes. I have been through chemo and radiation and now I am biting my nails and waiting for the results of a PET scan I had on Friday. (My CT scan was inconclusive.) I guess the point is that you are in the right place and keep coming back--there are lots of us around who know exactly how scary this is. My doctors are all very positive with the exception of one I am about to fire. Becky

Gina D. Thanks for all the detail about your surgery. I have Stage 3A adenocarcinoma and have now completed radiation and chemo with the goal of making my cancer operable. The first CAT scan came back last week looking positive, so I am headed to Houston on Wednesday to find out what the exoerts in the big city say. Last I heard, they were hoping to do a right upper lobectomey unless the tumor does extend beyond the upper lobe. I have been nervous about the surgery--I am anxious to start living my life again--the chemo and radiation together really took it out of me for about 2 months--but I am excited about the possibility of the surgery taking the cancer out of my body. Becky

JudyB, it wasn't as bad as you seem to have interpreted. That is, they didn't go into surgery just to explore. I had had every scan they could think of. The PET scan was unclear about my lymph nodes, and it was the only scan that showed anything there. Before I went into surgery, they told me that I could go to an oncologist under the assumption that the lymph nodes were cancerous, as the PET scan seemed to indicate. Then I would be put on a round of chemo and radiation (as I eventually was). Or I could do the mediastinoscopy to find out for sure, and if they weren't cancerous they could go ahead and remove the lung tumor and it would be over. My husband and I decided that if there was a reasonable chance to do this without chemo and radiation, we wanted that. The only problems I have with the care the surgeon gave me were that 1) he underestimated to me the likelihood that the lymph nodes were cancerous--he said things like "They are going to show up reasctive because the lung tumor is so close. We can't tell if there is cancer there unless we actually biopsy them." All of that is true, but seemed misleading, especially when he told me after surgery that he expected that the lymph nodes would be cancerous, and 2) He just had me sign the standard form you have to sign any time you have any surgery about the risks involved--the one that lists a whole bunch of complications with the last one being death. I wish he had told me about the possibility of the complication that I did have. Instead I woke up in ICU with a tube in my throat and a lot of pain in my chest thinking that I would not hurt so much if the biopsy had been positive. It was four hours later when I learned the bad news. Anyway, I guess that this is a long way of saying that I have been satisfied with my care for the most part. I think that this doctor might well have given me more information if I had known what to ask, and that is really the problem--in the beginning of something like this, you are too stunned to know the right questions. Becky

I just wish I had found you all sooner. This is the first place I have been able to find lung cancer stories with happy endings. I had doctors in the first stage of all this who were determined that my tumor couldn't be primary lung cancer because I didn't have risk factors. While I was glad that they did such a thorough job of testing that theory and they found nothing else, it would have helped to have been here to discover that I wasn't in fact the only nonsmoker to get this diagnosis out of the blue.

My name is Becky. I am 30 years old and have never smoked. I was diagnosed with NSCLC in January after complaining of a cough that would not go away. They orginally thought it was stage II, even after multiple scans, and I was scheduled for a lobectomy on Valentine's Day. When they had me out on the operating table, the biopsied my mediatinal lymph nodes and found cancer there. The plan at this point had been to just sew me up and send me to a medical oncologist. However, there were complcations in the form of uncontrolled bleeding in my chest that caused the surgeon to crack my breastbone and open me up to stop it. After that I spent 4 weeks recovering and started chemo and radiation concurrently with the hope of controlling the lymph spreading so that I would be a candidate for surgery. I had 34 radiation treatments and two rounds of Cisplatin and Etopicide. The radiation wasn't so bad, but chemo weeks were absolutely miserable. Now I am almost 4 weeks past treatment. My hair is starting to come back in. I just got the results of my CT scan--the tumor hasn't shrunk much, but the oncologist said it looks "beaten up". He is hopeful that the miscroscopic tumors on my lymph nodes took a good beating too. Next week I head to Houston to see what is next. My oncologist here says that it wll be a surgical decision, but he expects that I will be back in surgery before long. Hopefully it will be more successful than the last one! My family, friends, and employer have been amazing through all of this. My daughter is almost three years old and has handled all this stress better than I ever imagined. For six weeks I couldn't pick her up and when she sat in my lap she had to be very careful not to hurt my chest--she just said, "You can't carry me because of your owies." When my hair fell out, she said, "You got a BIG haircut, Mommy." I had been in a new job for less than six months when the diagnosis hit. I missed a lot of work, but have not missed a paycheck. We had meals delivered by friends 3 or 4 times a week for three months. It's not exactly true to say tht I am looking forward to surgery--the last one was far from pleasant, but I am definitely ready to get on with the program--the waiting is so hard.