Addie

Such solid, reasonable, wise thoughts!! All packed in a woman who aspires to play the recorder, whilst puffing on oxygen to do so!! Ah, Fay....you are one of a kind, dear! But there is no denying the sageness of your thoughts. Just as they say that nobody has "I wish I'd spent more time at the office" on their tombstone....it's also true that we don't wake up in the morning (the majority of us anyway ), saying to ourselves...."Boy, I sure do hope today is a miserable, awful, horrid day so I can feel rotten and do nothing but pout and complain all day!! And the joy of living is more often in the details....not the BIG things. It doesn't take writing the great American novel, or making that big sweep of Western Europe or finally building that boat in your garage. Sometimes it's as simple as sitting in your own home, learning to play the recorder, or knitting a baby sweater (I find such joy in my knitting) or even organizing a box of family photos. Maybe simply just looking THROUGH the family photos! I too, am looking for a certain balance, Fay. Right now, it's between fearful urgency and the positive belief that I WILL be around for a while yet. Little by little, I pick up a rock off the fearful pile and transfer it over to the positive pile. It helps too, to come here and find such wise words as those you so often offer to us! They help to center me again. I will begin chemo again today, if we can get there thru this bloody snow that won't quit falling. I mentioned to my hubby and some good friends (who also golf) the other day, that at some point before I die, I've always said I want to play Pebble Beach. It will no doubt be humbling and you KNOW it's going to cost a small fortune....but dammit, it's a dream I think it's time I fulfilled. Even IF I live many more years, eh? So, when I get thru chemo....that will be my reward, perhaps....the trip to Pebble Beach! I figure with what DH and I are saving by not smoking....we've already paid for the trip! Thanks, Fay, for.......well, just for being you!

Kel... Your mom was dx'd before me...and I was limited stage too. Just found out about 10 days ago that I now have the cancer back in my liver and pancreas. The fact that your mom's cancer has spread outside the lung.....I guess I'm having trouble understanding WHY her doctors aren't being more positive about second line chemo or tx? Forgive me for not remembering all the details....including the reason she was in the palliative care unit to begin with. Lately, my thoughts have been awfully muddled (as I'm sure you can imagine)....but you know, I hope while you're in FL. that maybe you'll consider getting another opinion! Or get one there, before you go, better still. I'm just troubled that her doctors aren't actively coming up with a new game plan to try to beat this! I told my hubby a long time ago, that there may come a time when I cannot take any more treatment and may opt to stop. He was hurt and angry that I would consider making such a decision "without him". Dear man....I told him that of course, I'd have his input....but ultimately the amount a patient can take.....is up to the patient! Talk to your mom. Find out if she is willing to have more tx....and if her docs won't discuss it....then find a new onc! I feel a sort of kinship with your mother because we're both golfers. I hope to get a few more rounds in myself before I check out...maybe even one at Pebble Beach!! How's that for dreaming big? Maybe I'm just not absorbing things quite right....but I just sort of got the notion that your mom's docs aren't really fighting for her....as much as mom herself or you are willing to fight. Forgive my meddlesome comments....but I'd like to see both your mom AND myself back out there playing golf all the time. Tell her I'm keeping her in my thoughts and hoping she has more tx that successfully takes care of things!

Trying to be delicate here...but you're female....and are you of that "certain age"? My #1 menopausal symptom was night sweats. Can just about count on one hand the number of hot flashes/power surges I had during the daytime...but nights? Forget it. Now...it's been 12 years - count 'em, 12 - since I had the major part of the equipment removed....and guess what? I still get night sweats. They sort of intensified a bit during chemo....but not hugely so. I guess I'd have to say, overall, they aren't as bad as they used to be...but after 12 years, I deserve that break, I think! Some spicy foods, some meds and even alcohol can cause them. You been spending too much time in that pub lately??? Here's a good article on the subject - http://www.diagnose-me.com/cond/C521732.html But if having these sweats seems really unusual or out of the blue for you...couldn't hurt to check with the doc...eh? I did note in the article that some cancers can be a generalized cause....but it didn't specify l.c. Hope this helps a bit. You know, it just struck me that my sweats may have improved when my hair took a hike!! I don't care...I still want my hair back.

You just kick some cancer arse, Beth....that's your first order of business....and we'll all be hoping and vibing for NO MORE NASTY SIDE EFFECTS OR SIDE ISSUES. Glad you can spend some easy time with your kids watching movies. It's not what you do together, so much as that you ARE together. It's hard when you feel like bird poop, to be the kind of mom you want to be for your kids. But I know you keep trying and I know your humor (being such a big part of who you are) has got to be a great boon with the kids too! Hang in. I'll be joining you tomorrow in the chemo trenches. We can pass a few vibes back and forth, eh?

Thanks, Jen. I'm ready. In a much stronger frame of mind now than I was a week or so ago. Ready to do battle. We all know it feels better somehow when we feel like we're actively doing something....like getting the chemo! Tummy is even better today. Found the magic duo....Oxycodone and Zofran, as prescribed by the doctor on call this morning. Worked like a charm on my nauseous gut! Onward......

Many thanks to all of you for your input. Seems the cath is a good idea, even with good veins....because eventually they are going to give out. Benefits seem to outweigh the risks...so I assume after this week of chemo, my onc will set me up for the port. Thanks again for all the info. Helps more than you know to get it direct, rather than off the net or from a doc or nurse who.....ahem.....has never actually HAD one!

Oh boy....this is celebratory news, TAnn!! I'm so happy for you...and thanks for the encouragement, too! Keep it up, girl. Start a "tree" of good news off this "trunk" and keep adding branches. Those three shrunken tumors will be gone soon with the residual effect of the radiation....I'm betting....and then you'll have even MORE good news to report! Head on over to Cindi's Pub and I'll join you in a "whatever" to celebrate your news!!

Hang in Ella. Even the non-cancer related stuff can be plenty annoying....but remember, the Pity Party at the Pub is still going on. You have time to go vent AND tank up on chocolate which might help...eh? Hoping things take a turn for the better for you. Sorta know the feeling of overload these days....but hey, we still have today to get through and I'd rather do it with more laughs than not. How about you?

Wow, that sounds pretty positive!! Thanks, Katie, for the info. Yet another tidbit of positive info to hang my knitted cap upon. I collect these wee bits like fairy dust to sprinkle in my brain to offset the fear, you know? So much better to seek out the positives than to get logjammed in the negatives. Anyone else with a tidbit of info?

I know we all react differently.....but just wondered if any of you have had experience with Topo given alone. (Well, alone but for the premeds). I start tomorrow and he's going to give me five doses, condensed into four days....if that makes sense. That way, I can go in Friday for a Neulasta shot. I tolerated the carbo and etoposide SO well last time, I'm not really overly concerned....but obviously my general condition is not as good now as it was before the last rounds of chemo and all that radiation. I guess Topo can be hard on bone marrow, and therefore the cells. As for nausea....perhaps a tad worse there too. Anyway, I'm PLANNING on not having any major reactions ...but just wondered who among you has had this chemo and how you fared with it? TIA for any responses.

Oh no, Lisa.....I'm so sorry to read this about your mom. I have no knowledge of anything other than the needle biopsy on my liver this past Tuesday. By yesterday, finally I wasn't so sore at the site. The procedure was a piece of cake, but then it wasn't the lung where there is more risk, it appears. Please know I'll keep your mom in my most positive thoughts and hope she gets some good news next month. This must be making you crazy...but you know we're here whenever you need to vent or unload. Keeping all good thoughts.....

Mayos, this is the first I've heard that you have to keep them dry!! So they need to be covered in something if you bathe or shower? Listen to me.....IF you bath and shower. I meant to say...WHEN! Hmmm...will investigate further...but still think it's gotta be the way to go if there is a chance of some long term chemo and lots of blood work. Just in this last week...I don't know how many times I've been stuck for bloodwork, dye contrast, more bloodworks. All I know is that both inner elbows are a bit bruised! Portacath sounds good even if I have to keep it dry. Anyone else have anything to add to the keeping it dry part?

Hmmmmm....not sure. Come here often? I forgot you had a cath, Geri...but thanks for the reminder and the more info I get, it seems it's prob. a good idea to go ahead with it. Bo, thanks for the referral to the other thread. I prob. missed it then because it wasn't of specific interest to me. It is now...and there was some good info in the thread. Thanks. Just like to have my ducks in a row and any questions ready before something "new" happens. So all this info helps a lot. Thanks, all.

My onc wants to install one after the first cycle of chemo. I guess he figures w/ four chemos a week, every three weeks....not to mention all the other recent punctures...that it's a good idea. I'd like to get some feedback from those of you who've had them or know about them. I do have good veins. Most of my chemo before, they put the IVs in my hands. I'm what you call a "plumber's delight" ....but those veins will only hold up for so long I suppose. I know the port has to be flushed every six weeks or so whether it's being used or not. But I haven't done any research on it yet...just going to do that and wanted to post here to get the word from those who know! Anyone?

I assume there is a little extra space in Rick's suitcase because he left the blinkin' FLU behind!! Welcome home, guys! You were missed.

For all the loving care you've always provided to Bob and Jo....I do sincerely hope you're taking care of yourself and your own emotions too, Nell. Your gift of friendship has been phenomenal. I admire you so much. Wishing for peace and comfort for all....

Will you need a moderator or have you already been inundated with offers?

Count me in. Does it matter that, since last Friday, I've sorta wafted back and forth between pity, tons of sleep and brief moments of positive thoughts already??? My chemo starts again on Monday, so that's a good cutoff for me too on this pity bash. Hope you've got plenty of ginger ale and Ativan on hand....eh? It's fast becoming my "new normal diet". Okay....anyone wanna start with how few pairs of pants fit them anymore? I'll go first. I'm down to about three...all pull on, and ONE pair that buttons juuuuuuuuust barely. Can anybody top that? Anyone wanna take a side run to TJ Maxx? I'm worried the chemo nurses are gonna think they're experiencing Fashion Deja Vu when I start showing up again.

Chemo begins again Monday thru Thursday. Five doses I think, concentrated into four days so that I can have the Neulasta shot on Friday. Apparently topotecan is hard on bone marrow and the blood counts. I have the reports from the MRCP and biopsy. There are four tumors in my liver (edited: I'd said kidney before) and "multiple" masses in the pancreas and "tail" of the pancreas. My onc used the term "generalized" and in context I took it to mean he suspects other, smaller tumors in my gut or other organs that don't show up yet...but are there. But...he maintains there's a chance to reduce the number or size of anything that is there with chemo...and after two or three cycles he'll scan or do an MRI to see if it's working. If not....well, then we go to round three, I guess or clinical trials. I dunno....a lot to think about right now. If the topotecan DOES work...then I'll stay on it...for how long, I don't know, but at some point he said maybe it'd be more a maintenance dose. Anyone ever done this with topotecan? I'm trying hard to stay positive at this point. Can't hurt and might do me some good to remain that way. But underneath the surface...it's like a duck on water......paddling for dear life. I am scared I won't have a lot of time. I know.....define "a lot". How about - am I gonna make it to my 59th birthday (Sept) or be here to decorate a Christmas tree this year? To see my son get engaged and then married? I've always felt the worst part about dying is all you miss out on after you're gone. Any positive thoughts for my future....are gratefully accepted.

Aw crap, David....I'm sorry. But I know how you feel. I'll be thinking of you wishing you the best. Try to remain as positive as you can and enjoy every moment you can. It's got healing properties to be positive!

Ellen & Len, this is wonderful news. Hope you have a bang-up celebration this weekend as you've surely earned it!! I'm sure Cindi's Pub will be open if you.....ahem.....are sober enough to come back and tell us of your party! Raising my glass to you guys.....congrats!

Boy, Cathy....you are so brave and have my deep admiration. I SO hope this works for you and will continue to send you only success vibes and all good thoughts! Keep that smile in your voice and kick some cancer butt, girl!

Well now....this is JUST what I expected to hear and I'm delighted for you, Sharyn. Heave a big sigh and go treat yourself to something nice!

Sometimes, it's not WHAT you say....it's HOW you say it. IF....and it's a sizable "if" to me.....that PMer was trying to encourage rather than berate....his/her choice of words was horrendous! Someone should be signing up for a communication course, STAT! And isn't it interesting too, just how EASY it is to send off a message like that when you have the anonymity of the net? User names. The ability to troll and make up an identity. The ability to lie. Get ugly just for the "fun" of it. I think we all pretty much know that those things aren't a huge issue around here. We're here either because we HAVE lung cancer or love someone who does. This ain't a party place! But that doesn't mean someone can't sneak in here to have some sick fun with the sick people, either....does it? You have to wonder what a person gains by kicking someone when they are down? Here's one for you...much less troublesome than your PM....but I talked to a "good friend" the other day. First time in months. She's one who disappeared when I was dx'd, but calls (it appears) if I have a crisis or relapse. Of course she'd heard of my relapse and wondered if there was anything she could do! I said, simply, "Not really, but thanks for asking. It would be nice though to hear from you once in a while". She and I had that discussion a long time ago...about her not being in touch and how it hurt my feelings, so this was NO surprise to her. Do you know what she said in response? She said, "I will make a concerted effort to do better." I hung up wondering why it takes a "concerted effort" to pick up the phone or send a card to a good friend? I decided it doesn't....and despite my saying to her that it would be nice to hear from her....I have no expectations. I think it's time to give up the ghost on that friendship. Beth, I'm sorry you had to contend with this too. Keep your focus and try to just reject it when someone feels the need to contact you privately to berate you. We all need a little kvetching, self-pitying, complaining and fearful time. You don't get thru those emotions by stuffing them, only by working THRU them. I raised my kids hoping they saw me as human, not God in some form. I made mistakes. All parents do....but letting my kids see me as honest, and sometimes emotional, wasn't all bad. Forget the PM and the PMer....there are plenty more of us here who understand. Hang in there.

Hey, Di... You don't have to post a full face pic if you're shy....but how about one of the back of your bald head? I took one of my long hair, back of the head, before it started coming out...just so I'd have it. I wore my hair up...so nobody saw it down like this very often. I've only had long hair twice since I was 7 yrs old!! So when someone asks me if I'll grow my hair long again....I say, "Hell NO!! The last time I grew my hair I got cancer!" See.... Now....nobody knows that's me....so I expect to at least see a pic of the back of your head as you'll retain your anonymity!