cindi o'h Posted July 28, 2005 Share Posted July 28, 2005 gang.. Just got home from a long day. Stopped and shopped after my app't and also brought a best friend some mac nuts from Miche'le while I was in town. She and her husband will be celebrating 57 years next week!!! Okay so enough chat... It was an informative appointment. At one point, I felt really scared and overwhelmed and confused with all of the information that I started to well up until the faucets started to roll. The nurse offered kleenex and I helped myself to doctor's coatsleeve instead, which brought shock and laughter and stopped the tears. Kleenex never works for me, only humor and silliness can break me of a jag. He said that the large effusion is back. He wants the fluid off permanently as this is not good for the lung to be on there. So. He talked pleurodesis (talc procedure) and also, if that is not possible then to do a pleurex catheter (first time I have heard of this...anyone else???). This is what gave me the creeps. It is a semi-permanent/permanent catheter implanted so that I can drain my lung at home.... Gross!!!!! I just hate that something would be sticking in my body and coming right out of it looking like a hose and a hole or whatever... I just don't like the thought of it! Also, the funny lookin' thing is still there. No change. He still wants to biopsy since the onc thinks cancer met. He said though that it would be a high risk surgery for me since it is in the direct area that was radiated. He said that the lung is like an orange peel now and doesn't hold up to surgery very well. The staples don't want to stay stapled. Yikes. He said that even if he were to try to biopsy this area, the tissue may not show cancer even though there may be cancer there. He said that he would be limited in how many specimens that he can take. Yikes, again. I asked about a PET. He said it is not conclusive. Other things can show hot spots. He didn't seem jazzed about it at all. I asked about assuming it is cancer and treating it with Tarceva or Alimta. He set me up to talk with the onc. Tomorrow the nurse will call me for a time for the fluid to come off so that I can feel better. That's about all that I can think of. I have a lot to think about again. I wish it weren't so difficult for me to know what to do...what is best. I don't like invasion, but if I have to, I will. Thanks for listening again. Cindi o'h Quote Link to comment Share on other sites More sharing options...
Tiny Posted July 28, 2005 Share Posted July 28, 2005 Cindi- Lordy, Lordy, is your plate overflowing, or what??? I'll be praying that the fluid drainage goes well and that you will be guided to choose a healing path. Sending concern, love and hugs. Quote Link to comment Share on other sites More sharing options...
Kasey Posted July 28, 2005 Share Posted July 28, 2005 Cindi, Man, I wish I were close to you to be able to go to these appointments with you. That was just too much info for one person at one time. I say let's take care of the fluid and then revisit the options for the rest later, huh? One step at a time. Sometimes even one seems too much, doesn't it? Hope you can rest tonight and greet tomorrow with a fresh mind and able to process more info. Sorry, Cindi...really. Love, Kasey Quote Link to comment Share on other sites More sharing options...
Don Wood Posted July 28, 2005 Share Posted July 28, 2005 Cindi, so sorry things are complicated for you. When I was first diagnosed with prostate cancer, I had a biopsy to be sure. I chose radiation therapy. When it recurred (according to PSA), I asked the doc about biopsy and he said the same thing your doc did -- it may or may not show cancer, and if it did not, he would still recommend treatment. I went with no biopsy and radioactive seeds treatment. Been fine ever since. Best to you. Don Quote Link to comment Share on other sites More sharing options...
stand4hope Posted July 28, 2005 Share Posted July 28, 2005 Well, poop! Cindi, like Kasey, I wish you didn't have to go to your appointments alone. It sure does sound like you had a caring doctor and nurse, though. It seems to me that I've heard about this procedure, but I can't be sure. I know that everyone that has had any kind of an effusion drained almost always reports that they feel a lot better after it's been done. I vote for feeling better! Even though Tarceva didn't work for my husband, Iressa did, for 9 months, and they are very similar. Every time I hear "Tarceva" now, I think about Bill's wife, and of course I always think about Mr. Ry. Just think about those two and pray for the same results - and so will I. Love and hugs, Peggy Quote Link to comment Share on other sites More sharing options...
Maryanne Posted July 28, 2005 Share Posted July 28, 2005 Well Cind, I am glad that you had your appointment postponed until after your vacation. That would have put a damper on it. I hate that you are going through this by yourself. Someone should go with you, for support as you really needed it today. It amazes me that you still put humor into a very scarey situation. You manage to make your doc and his nurse laugh. You are amazing!! Like Kasey said, lets start with that fluid thing, as I feel that is what makes your SOB, and you felt so much better when you had your lung drained last time. After you deal with that, then you can move on the the next step. One at a time. I am going to say some extra special meditation prayers for you. I know in my heart that you will get through this and will feel so much better. Keep us posted through all of this. Do not keep you feelings bottled up. Vent all you want, we would want you to do that. You are a special lady, and anyway we need you to run your PUB!!! Thinking of you with much caring and love. Maryanne Quote Link to comment Share on other sites More sharing options...
Geri Posted July 28, 2005 Share Posted July 28, 2005 I feel overwhelmed by all the news and I don't have to decide what's going to happen to my body. I wish I had the right words to help you through this, just know that I'm thinking of you and hoping for a speedy resolution to this setback. Take care Geri Quote Link to comment Share on other sites More sharing options...
Nushka Posted July 28, 2005 Share Posted July 28, 2005 Cindi, What an appointment. If noone can go with you the next time, take a recorder. They seem to throw alot at you all at once. I feel like after the fluid is off you will feel much better and by then you will have had more time to "think" about all of this other. Whatever you decide I have full confidence that you will make it the right way. Keeping you in my prayers. Nina Quote Link to comment Share on other sites More sharing options...
gail p-m Posted July 28, 2005 Share Posted July 28, 2005 Don't know what else I can say that no one else has said on this thread. Know that I join the others in always thinking and caring about you. (((Cindi))) Gail Quote Link to comment Share on other sites More sharing options...
Leslie221 Posted July 28, 2005 Share Posted July 28, 2005 Cindi, So sorry. What a rotten deal. I wouldn't like having a tube in me either. But, then, if it makes life and health better..I guess you may have to consider it. Before I was in the hospital I thought using a bedpan and having strangers help me with it would be the most humiliating, disgusting thing I could imagine. But after the second time I decided I didn't like it at all, but I could get through it. I looked on the net and found a website for the folks who make the PleurX catheter. They have lots of info and even have an 8 minute film you can watch to see what you'd have to do at home. (They don't actually show it in a person's body, though.) Anyway, it might give you a more realistic idea of what to expect, so you can decide. Here's the site: http://www.denverbio.com/physician_pleurx_catheter.html They also stress that because you can use it whenever you need without having to go anywhere, you can drain more frequently and that usually clears up the effusion quicker. Said most patients have it an average 40 days and then don't need it anymore. Still a yucky proposition and I don't blame you for thinking it's creepy. But, I guess yucky plus better is preferable to not-yucky and sicker. Good luck and I hope this will all work out quickly and well for you. Leslie Quote Link to comment Share on other sites More sharing options...
Fay A. Posted July 28, 2005 Share Posted July 28, 2005 I'm sending you a gentle hug, and it's okay if you wipe your eyes on my sweater, but I'm carrying tissue just in case your nose starts to run! (I also subscribe to the silly school of turning off tears). Hoping whatever you decide works out well. Quote Link to comment Share on other sites More sharing options...
Fall54 Posted July 28, 2005 Share Posted July 28, 2005 Dear Cindi, You are in my thoughts and prayers. I dont know how you begin to process all that at one time. I think what was written before me was good advice as far as taking one step at a time. Remember you have the whole cheering section here rooting for you! God Bless You, Jane Quote Link to comment Share on other sites More sharing options...
karenl Posted July 28, 2005 Share Posted July 28, 2005 Cindi Sorry to hear that more procedures are in your future! I hope that they do what they are meant to, and keep you well and comfortable. I have a friend whose mother had the talc thingy done 18 months ago, and she has had no problems since. Love Karen Quote Link to comment Share on other sites More sharing options...
ginnyde Posted July 28, 2005 Share Posted July 28, 2005 Cindi, I am right there with you kiddo, humor is great medicine to get through the tough parts of life. I am amazed that you remembered all the data the doc gave you. I agree with others that you need to get rid of that fluid first and then take a couple of deep breaths to make decisions about what to do then. It looks like you have a great doctor, but would a second opinion help you? Whatever you do, Cindi, we are all here cheering you on. Love, Quote Link to comment Share on other sites More sharing options...
shineladysue Posted July 28, 2005 Share Posted July 28, 2005 Cindi, Wish I could say something or do something to make this all easier. I guess there is no easy way, you just do it. I know you will and you will do it with a positive attitude. I'm so sorry all this is on your shoulders at one time. One day at a time Cindi . Please accept my prayers as the only way I know to help right now. Love you and wish I could be there to lend a sleeve. Love and Prayers, Sue Quote Link to comment Share on other sites More sharing options...
Addie Posted July 28, 2005 Share Posted July 28, 2005 I got my nose-wipin' shirt on, Cin. Feel free to indulge. Crap! I'm so sorry you've got another heap of "I can't eat this %$#&" on your plate...and I wish I had words of wisdom...but all of what ails you is pretty foreign to me and my kind of cancer, I guess. Maybe you can take all this in smaller bites...smaller increments. FIRST, get the fluid off of your lung and see how things shape up there. Then...you could have the conversation with the onc about the possibility of some chemo to possibly take care of that "funny looking thing". Go step by step instead of trying to figure out/find answers for the whole of it, all at once. Would that help it seem less overwhelming? I know when I had my relapse...and after I slept for nearly 3 days - hiding from the news - that I tried to break it all down to something smaller...more palatable, if that word can even apply. I focused only on the fact that my doc had a chemo to use and he told me "Topotecan works". So I mentally locked on that....and tried not to think too hard about the details which included a pancreas with "multiple masses" and four good sized liver tumors. Having the cancer back...and in TWO major organs was too scary. Too much to consider. So I focused on the TREATMENT for it...the chemo. It helped me get to where I am now. Take smaller bites of the plateful you've been handed, Cin. A step at a time....and you can do this and DO IT WELL, sweetie. Cancer BEWARE!! PM me your snail mail address, will you? I have something to send you that will help you not to worry! Quote Link to comment Share on other sites More sharing options...
Patkid Posted July 28, 2005 Share Posted July 28, 2005 Dear dear dear friend, You are awesome................I love the act of kindness you showed us in the Macadamia Nut reference. Your friend from HA showed love by giving you macs and you made the love bigger and stronger by passing it on and sharing the nuts. That is what we want to do today: All the love and support shown Brian and me ~ we are uploading and sharing with you..........no one loves us w/ macadamia nuts, but we are sending prayers, hugs, support and strength. Mostly we are sending ourselves so that you know we are with you and you are not alone in your cancer battle. Love Pat and Brian Quote Link to comment Share on other sites More sharing options...
terriep Posted July 28, 2005 Share Posted July 28, 2005 Cindy- Adding my prayers and concern - oh, yeah, and a gentle (((hug))) to make it all better. Quote Link to comment Share on other sites More sharing options...
Alisa Posted July 28, 2005 Share Posted July 28, 2005 I also agree to take care of the fluid first and then address the other issues. But I would still look further into a PET scan. Maybe a combination PET/CT scan. Even though other things can light up, it seems to me that your biopsy is risky, and at least a PET and even better, PET/CT machine would give a little more insight. Take care. Quote Link to comment Share on other sites More sharing options...
SDianneB Posted July 28, 2005 Share Posted July 28, 2005 Well, rats. My old granny would have said "if it ain't cockroaches, it's pi$$ants." Ain't it the truth. (sigh) That's at the top of my list of things I despise about this disease most -- getting to a point where you feel decent and think things might be falling into line, and then some strange something shows up. I don't know if I'd advise you either way on a PET scan. I've had SO many of them, and when my gallbladder flared up, my entire body lit up in the PET scan - yikes! The Onc. knew this would happen, but she likes PET scans (I think mostly because the practice she's in owns an imaging center nearby that does them.) When the dust settled, it was just pancreatitis and the spots on my liver that were "real." And we found that out through ultrasound and biopsy. Oh well. Hang in there -- let us know what goes on, ok? Di Quote Link to comment Share on other sites More sharing options...
lindseysmom Posted July 28, 2005 Share Posted July 28, 2005 Hi Cindi, I am sorry that the news was not so great. Leave it to you, to have everyone laughing. You are so amazing, you are a inspiration to everyone. Best Wishes, Dee Quote Link to comment Share on other sites More sharing options...
Haylee_38 Posted July 28, 2005 Share Posted July 28, 2005 Well Pooh !!! So sorry it was not better news. Hang in there and know my thoughts and prayers are with you always. Miss Luna is sending you a huge cyber hug and kiss. Haylee Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted July 28, 2005 Share Posted July 28, 2005 Cindi,next time have the drs. meet us at your pub.That way we can all help you listen to all that stuff. I f you get the docs shirtsleeve wet then you can use my sleeve. And while we all figure out a way to remove the fluid from you we can at the same time indulge in installing new fluid (bud lite or something). Sorry your meeting was less than you desired in good news.Hang in there friend and good luck with your onc meeting. Quote Link to comment Share on other sites More sharing options...
finster Posted July 28, 2005 Share Posted July 28, 2005 Sending prayers and positive thoughts your way... Quote Link to comment Share on other sites More sharing options...
TAnn Posted July 28, 2005 Share Posted July 28, 2005 Cindi, Yep, I'm the one you need to talk to about pleural effusions. The Pluerex Catheter is the same thing I had, they call it the Denver Catheter here, but it is the same thing. I had mine in 5 1/2 weeks, and my husband drained it for me every evening when he got home from work. (Can you imagine, what a thing to look forward to ) The procedure to have it installed is pretty quick. They don't knock you out, they just give you a local, but ask them to give you something to calm you down, I did and they finally gave in and it helped me get through it. They make 2 incisions just under your ribs and insert this tube with holes all in it up into the pleural cavity of your lung. They keep it in with 2 stitches and then a portion of the tube hangs out of your body with a "valve" on the end. They give you a kit to take home with you to do the draining. The kit includes the bottles you will be draining into and the necessary accessories like gloves and gauze. You just attach your tube to the tube on the bottle and open the valve and it drains by itself. Not pleasant, definately not fun, but only temporary. Some people only need them in for a couple of weeks, I needed it in for 5 1/2 weeks, but the good news is that my fluid has remained under control for over a year now. When you are no longer draining any fluid, you get to have it taken out. Sorry for the graphic description, but I wish I'd had it when I had this procedure done. Feel free to pm me if you want more info or just support Cindi! TAnn Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.