jcawork Posted November 11, 2004 Share Posted November 11, 2004 Thought I would update everyone on how I am doing. I haven't done this in a while. I have finished round #5 of carbo and VP, finished radiation 34 tx over 7 weeks. I never had any neausea I did not get esophogiolitis I have had heartburn since tx started-maloox by the gallons I did have hearing loss from the first dose of Cisplatin My counts (wbc, rbc and plates) have been a wreck-neupogen at home I did get pneumonitis-still have it -big cough and wheeze since 9/12/04 Got a bladder infection w/ my counts were down-antibiotic I never lost a pound (popsicles and chardonnay diet) and I am a lot more jiggly! Total out of shape blob The exhaustion comes and goes. SOB comes and goes I have been up and down w/ depression and anxiety I have not slept well since the coughing started 2 months Still struggle w/ giving up the smokes 100% Have worked PT from home Have incredible Rad. Oncologist, Rad. team and chemo team. I got my CT's done yesterday and they were NED (chest, abdomen, pelvis). I still have a 1cm nodule that they think is dead and the radiation damage is there. My Pet was today-waiting for results to confirm CT scans MRI of my head tommarow w/ be fused w/ CT and PET Need to do PCI, but I am dreading it Meet w/ my Oncologist Fri to see if I am done or if he wants me to do more chemo. Hope I am done. This scanning thing is a hell of thing. The anxiety is horrible, Even if everything is NED and I am finished, I am so freaked out about recurrance. As we all know SCLC likes to come back, we have seen so many people on this board complete all the TX's and then boom, they get hit again. I know attitude is important, but on this post I thought I would be honest about how I feel instead of working at saying the right thing and looking brilliant. I feel very fortunate and very threatened at the same time. I don't think I could do it all again. I have made some great friends on this board. They have been my inspiration and my hope. I am not religious and I am unable to get the same "hope" I see others get from religion. I have recieved such inspiration and love from my friends on this board. What survivors, what guts! I will report back where I stand end of the week. Thanks everyone for being there. Thanks to all who have walked this road before me and shared about it. Jen Quote Link to comment Share on other sites More sharing options...
annjael Posted November 11, 2004 Share Posted November 11, 2004 ((((((( Jen ))))))) I pray you get the best news on the rest of your tests and scans. I hate waiting for results. Makes me crazy er. I go through it with mammos every year. It was a bit easier with my husband there for support. I wish they would just go away,,,,,but,,,, I can't let that happen. Try to hang in there and know that prayers and good thoughts are comin your way. Peace and blessings Annjael Quote Link to comment Share on other sites More sharing options...
stand4hope Posted November 11, 2004 Share Posted November 11, 2004 Thanks for the update, Jen. You've had it pretty rough. I just bet those scans are going to come back clean, clean, clean. I also hope that something can be done for your cough very soon. Hang in there, girl. We are all here to give you as much support as you need. Love, Peggy Quote Link to comment Share on other sites More sharing options...
Addie Posted November 11, 2004 Share Posted November 11, 2004 Ah, Jen..... NED!! I can't stop smiling for you. You're gonna be fine. I know the mental ghoulies sneak up on us...they have on me too. But I'm going to share with you what MY onc told me right after he told me I was NED. I asked about how often I'd have scans...and he said, "Don't focus on the scans. Think about where you are NOW. I know that might not make total sense to you...but just think about it for a while. I know you'll get it." So I thought about it...and I think what he was trying to tell me was NOT to live in fear, scan to scan....but to just go out and live my life! Hopefully the scans will take care of themselves and I'll continue with ol' NED....but meanwhile, I do intend to live my life! I'm going to try my damnedest to keep on living fully and I hope you will too, sweetie. Don't let the fear of recurrence dictate the flavor or tone of your days. Please! One of these days cancer might rear up and bite us in the butt again. But then again....it might not. Either way, to live out our days in fear - however many of them we have - just seems a waste. I'd rather laugh my a$$ off than worry it off, any day! You've been through a lot....a whole lot more side effects than I ever struggled with...and HERE YOU ARE....dancin' with NED. So it was worth it, Jen! You get that cough kicked...and you'll be golden. As for attitude...well, even those with great attitudes probably still have moments of fear. I know I do. My DH told me just tonight that lately, I seem to be abnormally concentrated on the fact that I might NOT have many years left. I told him that I think sometimes, it's necessary to remind ourselves of just how sneaky and deadly this disease is. A reality check of sorts. And then I try to go back to forgetting about cancer and just living. My excuse this time? Well, I'm halfway thru PCI and tired. Not completely dragging...but tired. I may be a quart low on brain cells too....eh? Anyway, sweet Jen...congrats to you. I couldn't be happier that your scans are looking good and NED is with you! I'll email ya the rest of what I have to say..... Love, Addie Quote Link to comment Share on other sites More sharing options...
chloesmom Posted November 11, 2004 Share Posted November 11, 2004 Jen, Thanks for the update--you certainly have been through a lot, but you are a strong woman and if you come out of this on the other side with a good result, it is so very worth every bit of discomfort, don't you think? I think all of us here can understand the anxiety that scans and follow-ups produce. It seems like I time my life by my three month exams and x-rays. I've got to get over that--it's no way to live, it's just that I don't know how to just put those thoughts aside until it's test day. That's one department where I definately need to improve. Although a lot of stuff has happened during your treatments, it doesn't really sound like you've experienced anything I haven't either had happen myself or read about from one of the people here on the board. It would be so great if you could totally give up the smokes--if I can, anyone can, I swear. But, if you think about it, not smoking is probably the single best thing you can do for your health and would be a big step in reducing anxiety during scan time. Believe me, I know how hard it is, it's the hardest thing I ever did, but I'm really glad I don't smoke anymore after all. Keep up the good fight--you're doing great! Cindy Quote Link to comment Share on other sites More sharing options...
J.C. Posted November 11, 2004 Share Posted November 11, 2004 Jen, Soon you will have all the results, and I wish they are all good. It is time for NED to get in you life, for a long time. Good vibes going your way. J.C. Quote Link to comment Share on other sites More sharing options...
daggiesmom Posted November 11, 2004 Share Posted November 11, 2004 Jen, You've come so far and have done just great! I've found that worrying about the scans really, at least for me, does nothing more than bring me down and makes no difference in the outcome. Whatever is there, is there and no amount of worrying will change it, so why worry? Anyway, that's how I try and look at it. Congrats to you for your courage and strength. Keep on truckin' Joanie Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted November 11, 2004 Share Posted November 11, 2004 Jen,It's good to hear from you.All in all sounds like you handled everything a little better than a lot of us did.NED is super.Am sure other scans will be fine.Good job & way to hang in there. Quote Link to comment Share on other sites More sharing options...
betplace Posted November 11, 2004 Share Posted November 11, 2004 Jen, NED is an excellent reason for Happy Dancin'!! So I'm Happy Dancing for you today my dear. I know what you mean about the worry. I think about it everyday and have to conciously decide I will not worry about it all the time. Don't give the beast any more of your life than you have to. Blessings Betty Quote Link to comment Share on other sites More sharing options...
SDianneB Posted November 11, 2004 Share Posted November 11, 2004 "This scanning thing is a hell of thing. The anxiety is horrible, Even if everything is NED and I am finished, I am so freaked out about recurrance. As we all know SCLC likes to come back, we have seen so many people on this board complete all the TX's and then boom, they get hit again. I know attitude is important, but on this post I thought I would be honest about how I feel instead of working at saying the right thing and looking brilliant. I feel very fortunate and very threatened at the same time. I don't think I could do it all again. " Boy, oh boy do you have THAT right. I no longer dread laying on the table and having the actual scan done, it's now just the mental part. I want the results to be flashed up on the ceiling while I'm in the scanner! For a while, I got so dadgummed hung up on whether I was still going to be here in 10 years, that I forgot something. In order to be here 10 years, I have to be here 1 year first -- 10 times. In order to be here one year, I have to be here 1 month first -- 12 times. While I'm doing that thing called "life," the time passes and all of a sudden I look back in amazement and realize how far I've come. I'm so glad you are getting through it, and the NED is just terrific news for you. YAY!!! Di Quote Link to comment Share on other sites More sharing options...
DonnaB Posted November 11, 2004 Share Posted November 11, 2004 Jen, Thank you for sharing your remarkable bravery. You are part of the strength and hope I find here and reading your story of courage has given me inspiration today. I am going with my husband later this morning for his PET and CT. It has been a bumpy ride with the anxiety for both of us since the last CT which was just about 2 months ago. May we all find serenity, courage and peace today to rise beyond the apprehension and hurdles. DonnaB Quote Link to comment Share on other sites More sharing options...
MayFrog Posted November 12, 2004 Share Posted November 12, 2004 Jen, So glad to see you have NED in your life!! I tell ya, tho, waiting on scan results has to be the worst part of this long journey we're all on. I know my anxiety level goes thru the roof at scan time!! Hoping everything comes out clean, clean, clean........ Mary Quote Link to comment Share on other sites More sharing options...
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