Addie

Oh, my how I wanted to reply to this thread yesterday when I first saw it....but I had a port put in in the morning so had to scuttle out of here and was sort of in a fog, the rest of the day. I needed a clearer head to reply. Let's hope I have one, now. Shelley honey, so many of the things that happen in life change us, that the most honest thing MOST of us can say is that we are continually in flux. Changing all the time....never to return to that person we were a week ago, or last year. Like layers of onion skin, our experiences mold us subtly day by day....but it is the major life events that eventually open our eyes to some of these changes and shifts, I think. You had an awful lot happen to you in such a short span of time...that most of us cannot imagine how you coped. But you have coped...and are still coping. You sort of answer your own questions above, with the quote I included. Perhaps, for now too...you need to consider staying on the meds. Take it slower, in trying to get off of them. You feel that cancer has killed a part of you, too....but in it's place it's left a new layer of Shelley. What doesn't kill us makes us stronger! I've always loved that quote and it sounds true and right to me. You're strong, Shel. Stronger than you know....but that doesn't mean it's not alright to feel weak, sometimes. To need the help of others. To mourn your losses still....or again. Losses snowball. And I still know that something could happen tomorrow or next week that will make me grieve and mourn all over again, the loss of my own parents, sister, aunts, cousins, due to that snowball effect. (Today, BTW, is my father's birthday. He'd be.....get this.....104 years old. He was 45 when I was born! Happy Birthday, Daddy!!) Anyway, honey....I may still be in a mental fog here and not have made much sense...but others here have spoken such cogent, wise words. It does get easier with time....we DO refind our sense of joy in life, and fun....but yes, the losses and layers continue. It's part of life. There is a Ralph Waldo Emerson quote I also love. It's supposedly about integrity....but to me, it also speaks to strength and courage. I'll close this with that quote: What lies behind us and what lies before us are tiny matters compared to what lies within us.

Most oncs will test the blood each chemo cycle, to stay on top of both WBCs and RBCs. Certainly, your SO can inquire and even get a copy of the reports to keep at home, if he wishes. They are his records! They won't give the shots unless they feel they are needed....but conversely, your SO should report any change in how he feels. If he's more tired, maybe the RBCs have dipped again, between tests. Keep up the positive imagery too. I think it really does help to positively picture the cancer being expunged from our bodies. I try to do it at least once daily. Keep us updated and I hope his bone scan is clean...but better to find anything sooner, rather than later. Be sure to let us know when you hear results.

Awww....the whole family is lovely. Luna was a good choice, Cindi. Good name and great little face on her. This is gonna be fun...watching her grow up. Haven't been a Cat Aunt for a long time!

Hi Summer.... I saw your reply on my post...re: Topo...so will just reiterate that I had NO issues. Actually, yesterday the nurse told me it tends to produce fewer nausea issues than a lot of other drugs! I thought I'd read otherwise on the internet...but sure liked her comment better! As to white cells....part of that issue is that they've already been suppressed by the earlier treatment. So starting a new chemo just sort of enhances the process. But I had a Neulasta shot a day after my last chemo on cycles 2 thru 6 last time. And will have one every time, this time! My white cells have never dipped below normal range and I have a couple other autoimmune conditions going. The nurses did indicate they may dip a bit more this time....and of course I had them remind me yesterday that the most "vulnerable" period for infections is 7-10 days out from chemo....but again, she said that tends to apply more strongly when you're taking the platin drugs (cisplatin or carboplatin.) Getting so I know more about this stuff than I wanna.....you know? But I'm sending up thoughts that your SO responds well to the Topotecan and sees some improvement....some shrinkage and certainly stopping the growth of new tumors. Try a little positive imagery along with tx. Can't hurt and may help. You can read about what I do in the other thread. Best of luck....keep us posted!

Great news. And Karen is making my favorite thing for dinner.....RESERVATIONS! Go out and enjoy yourselves, and David, I'm glad you're feeling better. Both of you!! Sleep often does help a lot! Justa...glad to know YOU had the oomph too, to go to the ER. Sounds like you're doing better too. Hey....maybe we are ALL on an upswing!! FayA too!! Wouldn't that be great?

Holding all good thoughts for you Fay, and just glad you have an answer as to what's been causing this bleeding and pain. Whatever it takes.....we're here for support....but let's get this taken care of. Let us know if there is anything special we can do, but know you've got our best already...ok? Thinking of you...waiting with you for more word...

David....if the meds do it for you right now...then use them! I'm just hoping your pain subsides real soon. You're fortunate to have such a great family...on both sides...that will be there to help, too. It's got to be such a relief sometimes to know you've got solid back-up...eh? Thoughts are with all of you for you to feel better soon and get back on the Road to NED!! Hoping to meet you there, buddy!! I'll bring the vodka or beer...you bring the chips, ok?

Thanks all....and now I'm just hoping this attitude can maintain once the Decadron "high" wears off. The nurse told me today, that I might crash a bit, coming off the Decadron. I didn't really last time. Not at this dose. Only when they had me on a higher dose, which they use with the platin drugs. But after I had a week-long weeping meltdown around cycle 3 last time, they cut my 'roids by about half...and that's what I'm getting now. And if I come down a little, it'll mainly just shut me up. You know the ad with the old woman saying, "I've fallen and I can't get up"? Well for me, the line is, "I'm talking and I can't SHUT UP!!" I'm serious. Decadron just turns me into a magpie. They stuck me out in the Atrium all by myself for chemo today and I think it was a PLOT!! (Nah...the inside rooms were all full...that was why. So...I got a good, quiet hour out in the Atrium, listening to the waterfall...and visualizing killing off cancer cells!) I will still do my best to stay positive and UP....as it beats the weepies any day. If I can get my port put in tomorrow without TOO much tenderness with it afterwards....I'll be all set. If it hurts a bit....then I've got chemistry for that...and perhaps a new box of Caramel center Nutty Buddies! I'll be fine.

I agree with the others....and am VERY glad Dad saw his doc when he had the fever. ANY sign of infection/fever should ALWAYS be reported to the doctor!! Can get serious fast, when your immunity is suppressed by chemo. Not to pick a nit with you kimmek but Aranesp is for RED blood cells....for if you are anemic from treatment. Neupogen or Neulasta are given to boost WHITE blood cells...the infection fighters. Both are important, if your count numbers drop...but I think with RBCs lowered, the anemia makes you a lot more tired. I automatically get a Neupogen shot at the end of each chemo cycle to keep my white count UP, within normal range. I've been very lucky...it works well for me. And during my last rounds of chemo, eventually they gave me an Aranesp too...but I think I only got that shot every TWO weeks. My RBCs did go JUST under the lower end of the normal range...so were a tad low, but not drastically. Last time I had my bloodwork done...there were within range. We'll see how it goes with future cycles, now that I'm back on chemo again. Okay....enough of me. Had my Decadron today and I CAN'T SHUT UP!!

Yes, but an extremely wry one....and I'm thinking, "Guess who hasn't had any coffee yet this morning?" Thanks, Karen - but what's the alternative to this attitude? Misery? Doesn't sound like much "fun" to me. Betty...thank you...and I hope you know you are always on my mind, sweetie! How are you doing? You never complain!! So I hope that means things are going fine, shrinking, reducing, leaving you with less pain, fewer tumors and some positives to enjoy. Gonna give us an update.....huh, huh? Were your tumors ON your liver? Mind seem to be IN it...and one of them is 4 cm. From "nothing there" on a CT in January, to four tumors, one of them 4 cm. IN the liver in February. Never mind the "multiples" in my pancreas. Sheesh this stuff goes fast sometimes...but as my onc said, and Doc Cunningham concurred here...if the cells are dividing that rapidly...they WILL drink up that chemo very well. Good. Let the little buggers OVERINDULGE themselves on Topo and DIE!!! That's the plan. Are you tolerating the Cis okay, Betts? Had any scans along the way to let you know how you're doing? What are you now....around cycle 3? Bring us up to date, will you (and if you've done it recently and I missed it....forgive me. I'm missing some posts here and there.... )

And it's not been bad at all. It must be the Zometa that David C is also getting that is causing him pain and discomfort...because I've had NO ill effects at all from the Topotecan. Today is the last infusion of this cycle and tomorrow morning I get the port installed while - they said - my counts are still good. After the procedure, I'll also get a Neulasta shot. Might as well stick me again while I'm down, eh? I am visualizing the Topotecan working...at least twice daily, and one of those times during chemo. For just a few moments....I "see" little hardhatted cocktail waitresses serving the chemo drinks to the cancer cells. They toss them back, get little +'s for eyes....and keel over dead on the floor, only to be washed right out of my system with all this water I drink....leaving behind only pink, healthy looking liver and pancreas tissue!! Yellow hard hats, some of you might remember, were my symbol for this fight from the beginning. Anyway, mentally I'm WAY better as I'm doing something....fighting with chemo and imagery and optimism. It lives on me much better than the fear and angst. But this is a reality check too about this disease, so there are some things I will be taking care of over the coming weeks because if I DON'T....a lot of family history is lost. I AM the senior generation. When I go...if they don't know it....there is no one else to ask, re: my family of origin's history. And if "some people" don't do a couple of things the way I want them done after I'm gone, then dangit....I'm going to be spending part of my eternity haunting them instead of having a good time on the other side, you know? So I have a few instructions to write out as well! So...plans are ahead to take care of some business...but otherwise life goes on. Can't say I'm taking up the recorder like Fay or stretching out into any other brand new directions (yet)....but I continue to do the things I love to do and have been doing! My crafts, reading, staying in contact with friends, seeing my men (hubby and sons) as much as possible. I keep muttering to myself....TOPOTECAN WORKS! Two doctors and a nurse have said that exact two-word phrase to me. From their lips to God's ears.....eh, Dave and Karen? I'll update you guys from time to time...but for now, all goes well and I know there are others here who cannot quite say the same. If I'm not around as much...well, I know you understand how it is in tx and with some "unfinished business" to take care of re: family stuff. But I'm here in thoughts much more often and wishing everyone the very best, always. If you've got an extra good thought or two left over to send my way - I am always grateful for it! Thanks!!

I don't know nothing from stuffin' no new meds in no nebulizers, Miss Fay....but it seems to me if the drummers up the road can keep up with you, then honey, the drugs must be workin'!! You're a piece of work, Fay. Dang, I wish I could come to your rescheduled tea party....and I hope you don't mind, but I'm in the process of stealing the idea of it all. Have even picked out and BOASTED to the girls already, about the rhinestone danglie earrings I'm gonna wear to make 'em all envious! They, of course, all want YOU at our party!! The originator of such a fun idea. This is my cyberteam of 14 and I told them about your get-together...and they all thought it was SUCH a great idea. An adult, dress up tea party. So we are going to try to have one...but the problem is....we live everywhere from Nevada to Seattle to Ontario to Connecticut!! We might miss a couple...but we'll try to work it out. Anyway, glad you have some new weapons and hope you're feeling better each day, and playing without too much difficulty. Let us know when you and the drummer boys start collecting groupies. The age span is gonna be the same as your tea party group....eh?

Having a conversation with God right now, on David's behalf. And sending all my best vibes the Chapmans' way.

Kate ~ I'm so sorry I didn't see this before, and even more sorry for the loss of your father. I too, was 27 when I lost mine....to a series of strokes. It's never easy...but I felt too young to be without my dad. I'm glad you found some comfort and answers here during his illness, and again, you have my profound sympathies for his loss.

Late here too, Ry, but hoping by now that some answers are being found for John. Sending my best, hoping for resolution. Dammit, this is one tough disease.

So sorry I missed this till now...but of course, my best always to Lucie. I'm so glad she can have this out surgically and am wishing her a speedy recovery so she can get home to her main guy - YOU - cuz I know that will make BOTH of you happy!! Lucie.....HEAL!! Fast!!

What a feel-good story!! Hey.....we have cyberfriends, why not a cyberpet? Haylee...you and your girls are wonderful to fulfill this for Cindi!! And Luna is a great name. I love the webpage idea...and your choice too Cin....sounds like some Torty in that cat? I too, love the black/orange harlequin faces on Torties. We cannot have cats here either....or haven't tried for years, due to hubby's childhood asthma issues. Last time we had a cat, hubby could't breath. We rehomed the cat thru our vet...and it turned out YEARS later, our youngest son played football with the son of the family who took Meatball (that was our name for him...they renamed him. Something sorta mundane...cannot recall. ) Anyway, we went to one of the football team's spagetti dinners at their house and got to see Meatball again....some 10 yrs later! He was fat and happy....but didn't remember us. I didn't expect him to....but WANTED him too....you know? Enjoy your cyberkitty!! What a grand idea.

Nell...you sent Bob on his way with music and love, family and friends. It sounds like his passing has brought some peace to everyone. I'm so sorry for his loss. Such a friendship you shared...and I know you'll continue to share with Jo, although she is now one, not part of a couple. Bob was a lucky man...but I have to figure he merited the love and frienships he had. Speaks a lot for who/how he was. Godspeed, Bob....we are blessed to have known something of you and your courage through your very dear friend Nell. We know you'll be watching over those you left behind.

Milli.... I had 13 days of PCI in November. It's quick and painless. If her doc recommends it...there is little to fear....some short term memory loss perhaps and of course, hair loss. It takes longer to grow back in from PCI than from chemo. As to the memory...well, as we get older we start to have a bit of that anyway, right? With PCI, though, we get a new excuse!! Having the mask fit to her head can be disconcerting. They do a mesh mask to stabilize and hold your head still during radiation...which lasts only 20-30 seconds or so. But PCI is very precise....and that is good...so I just closed my eyes and didn't worry about the mask. The mask is attached to the table during radiation so you cannot move your head. They will discuss it thoroughly in radiation too...and you should go with her so she has another pair of ears and someone to help her remember any questions. But it's really not a huge deal. My hair is coming back now....so it took about 3 months to "grow a new crop" this time.

Such a sticky wicket...as we've discussed a bit. But in your case, more complex due to working together and the insurance issue. I just hope this all works out in a way that is palatable and least troublesome/most right for YOU, Di. You're MY concern here....not sis' need to "rule the working roost". Gawd...you can pick your friends, huh? Relatives....well, you get what you get. Don't know many people that didn't get a klunker in there somewhere. Guess that's part of how we grow up a little stronger, huh? Tossing lots of good vibes your way that this all works out okay! Love you.

Karen.....thanks! Reaching out to you guys with one hand....and reaching out for those miracles with the other!! (Hubby would say, "Good!! That way she's got NO hands left to write checks at the craft store!! )

Sending good thoughts your way...and I'm sure you'll do fine. Lots of good advice here already....but it's not as bad as we often fear in advance. Mouse was right with "listen to your body". You will get tired...especially with chemo AND radiation at the same time. Don't fight it. Rest or nap when you need to. I'm a veteran night owl...up every night reading, on the computer, watching t.v. till midnight at least. If a book is REALLY good...I'd read till 2: am. Sure didn't do that during treatment!! Often in bed 9:30-ish and asleep by 10:30-11: which is EARLY for me!! Some really fatigued days, I spent all day in my jammies, mostly in bed dozing. Try to get your protein and stay hydrated too. Lots of water. Talk to the nurses for their input but I drank no less that 1.5 liters of water daily. Keeps the kidneys and such flushed out of all those toxins being infused IN. Keep us posted. Probably at least ONE someone here has experienced anything and everything YOU will!

You can't abruptly stop prednisone. Or more accurately, you SHOULD not. People on pred are usually "weaned" off of it. I was started on 10 mgs. back in August 2003 for Polymyalgia Rheumatica.....sort of "arthritis of the muscles". I'm down now to 5 mgs. and weaning off, 1 mg. per month....but was told if I ever was hospitalized to be SURE to let them know I was on it. I guess the effect on the body if you just STOP taking it can be severe. I have a post it note thingie on the back of my driver's license...just in case I ever end up in the hospital alone...unconscious...whatever....where I can't TELL them. Probably a better idea is to keep a list in our purses or wallets that lists all our meds. I do have a list on my computer that I update...and if I go to a new doc, I hand him the sheet with past medical history, all surgeries and any meds I'm on, and the dosage. It's easier than trying to remember it all sometimes, you know? Anyway, I digress...but again, you need to come off pred little by little. It can make you more prone to bruising and bleeding but it's a miracle drug in so many ways. Can take care of inflammation like a champ and it's even an appetite enhancer! But stop taking it abruptly....and I guess it can cause some real problems. Not sure what.....as I follow my doc's "weaning" instructions to the letter!!

Karen....we sorta know the feeling here! I started chemo today...same one...Topotecan. My onc and his partner AND the nurse today said they use it for second line or metastasized small cell because it works! I'm focusing on that too...on it WORKING...hoping for some decent time. I've got four tumors in the liver and "multiple masses" in the pancreas. It's not a pretty picture here, either. I'm older than Dave and have lived more of my life...but there still are things I want to see...like my oldest get married and my youngest get his MBA. That's gonna require up to another couple of years! The fear is disabling...but being in tx helps. We are actively doing something to fight, in treatment...so hang on to that too. I hope you guys get your miracle.....I truly do. And I hope I get one too ...at least long enough to fulfill those two wishes I mentioned. One foot ahead of the other and LIVE each day as much as we can. I have to tell you....my gut has been so bad since mid January....unsettled and mildly nauseated every single day...and after the premeds today....I'm like a new woman! Virtually no more discomfort. They are only going to give me 8 mgs. of Decadron tomorrow. I had 10 today. I know David has a hard time with the steroids...but ask how much he's getting. Last time with chemo....with the carboplatin...the started me at 20 mgs. Guess you need more with the platins....but eventually I was a weeping mess one week....so they cut me to l0 mgs. then. If David is getting more than 8-10 mgs. with the Topotecan....ask why. Maybe they can reduce him...still keep him nausea free...but not have him turn into Lou Ferrigno (The Incredible Hulk! ) All my best to you guys. Let's go get those miracles....eh?

Amen to that, TAnn. So well stated. I know my hubby feels useless sometimes....powerless to stop or reverse what has happened. And of course, he is. So am I!! But he does so much....around the house, all the grocery shopping, and driving me to and from all appointments or treatments! It's a lot. His life revolves pretty much around my schedule or needs...and thank God I've not been terrible sick thru any of this or needed hospitalization! It's sometimes tougher to be the caregiver than the patient, I think. Here's to all you caregivers who give so much and help keep us going. I can't imagine how those without a caregiver right there all the time, do it! Oh...and another thing we've discovered....people always ask how I'M doing....but not so many ask my hubby how HE is doing. I hope people remember to ask the caregiver how he/she is doing too!