Addie

Way to do it, Don~!! Keep on with it, as you inspire every sclc survivor to do the same. We love success stories around here. Meet you in Cindi's Pub to toast your success!

Jim....ask about Amifostine shots. They are not the easiest to take...some people cannot tolerate them at all. But I was able to tolerate them (until the last couple of days) thru 31 days of chest radiation. Amifostine, it was discovered back in the Eisenhower years, provides protection for the esophagus. I was able to eat pretty well throughout my chest rad and the only times I got sick were when I ate something they'd WARNED ME not to eat...like fried foods or anything spicy. I also found yogurt drinks very easy to get down. Dannon makes one called Frusion. They are 16% protein and I want to say around 250 Calories...so a couple of those a day were soothing AND helped to keep my weight up. I guess not every place even offers the Amifostine...but I hope it is available to you to at least try. I had to go about 1/2 hr. or so before my scheduled radiation to get the shot...which can go in the arms, tummy, thighs or high up on the posterior. Then you have to wait 15 minutes to make sure your b.p. stays okay. Amifostine can make it drop and they don't want you passing out on your way to radiation. I never had a problem with my b.p. and it was only the last 2-3 days really, when my body was starting to say, "ENOUGH ALREADY" to the shots. I had an allergic reaction and ended up with two red bullseys marks on my butt that lasted for 2.5 weeks. And NO I'm not gonna post a picture of them! The other thing with Amifostine, is that you have to get the radiation within an hour or so of the shot. So if they were running late in rad I would always REMIND THEM that my shot wouldn't do any good unless they squeezed me in there. They always did, within the time parameters. Good luck...and let us know what you find out. Meantime, even without the shots....cold stuff seemed to go down easier than hot...and you may be one of those who isn't terribly troubled anyway. But do keep us posted...eh?

Jana... Congratulations on your baby daughter. What a wonderful event~!! I know what you mean, but in my case it was my father who died just 8 days before I gave birth to my first son....Dad's first grandson. How he would have loved having grandsons...yet he never "met" either of them. I spoke of him often though. Still do...so my sons have a sense of who he was. And there are pictures of Dad and Mom around the house...as Mom died when the boys were only 11 and 7. I think it's especially hard when a woman has a baby, not to have her mother around...and in that regard, I was lucky, because I did have Mom here. But I can surely sympathize with what it is you feel. One thing I did when my dad died, was to write him a letter, telling him ALL about his first grandson. It was cathartic to write it. In fact, I think I actually stopped writing sort of "mid-paragraph"...never really completing the letter. I just wrote until I'd gotten enough out to ease the hurt. Maybe this would help you, if you were to write a letter to your mum. The cycle of life continues....and you have a new baby daughter to prove that...and to always remind you of the love you had for your mom. And that is a wonderful thing. Take comfort in your new wee one...as she is surely a gift to help you through the pain of loss. Time will help. Time and remembering all the wonderful things about your mum that you'll someday share with your daughter. Thinking of you Jana...and again, congratulations!

For those who wondered....I met these gals thru a dog training website that is now defunct. In late 2000 I joined the site looking for some help with our newly adopted, crate aversive Linus who also suffered from separation anxiety. Over time, a large number of us got to really know one another and became close...even though we'd never met. One of the forums at the old website was sort of a catchall forum...for talking about things OTHER than dogs. I was....uh....appointed "social director" of the group...which may or may not surprise some of you. When I was diagnosed....I wrote to 14 of these gals, asking them to be my "support team". By the time of my dx, I'd actually met 4 or 5 of the gals. A couple have even been here and spent the night. They have dubbed themselves my "Team" and have, in so many ways, been the wind beneath my wings throughout my cancer journey. They live everywhere from Massachusetts to Ontario, Canada to Washington, Nevada, Colorado, Long Island, upstate NY, Virginia and one even lives here in CT. Incredible women, incredible friends. I am blessed....but for not having any hair! Oh, and thank you all for the nice comments. I guess it did radiate how much I enjoyed my time with these two...and I want you to know I only had one little drinkie...because Lainer is a med student and said I could. They ARE dressed alike...in scrubs. Lainer brought scrubs for all of us to relax in and the fact that they both had black sweaters too, is coincidental. But they both wore their scrubs on the ride back home to Seattle.

....head? This was taken on our trip west. These two gals are cyberbuddies....part of my support "team" I put together when first diagnosed. I'd never met them before...only spoken on the phone. They drove 3.5 hours from Seattle to where we were staying in Lake Oswego (Portland area) to meet me and spend the night. We did nothing but laugh. Great gals, both of them. They thought the head kissing photo would be a hoot...so here we are and I'm sharing it with all of you.

Might I suggest a lemon filling in your cake. Mine had lemon and it was a big hit! Happy B-Day Cindy...I hope all your birthday wishes come true today and that everywhere you go, you are met with nothing but smiles...starting here...

Oh, Beth honey...I wish there was something I could say that is curative. I wish this wasn't happening to Bill or to you or your children. I wish I had words...and I just don't. But know you're all in my heart and my head and I hope for things to turn around. The way you care for Bill is so exceptional and I can only hope and wish that you get more time together to share and make memories. I'm just so sorry about how things have taken this terrible turn. Truly...it's hard to find words to say that might be of some comfort. I just feel an enormous sadness.

Seriously? You're asking ME this question? Really? I dunno the answer. Except maybe what normal is for me...and even that varies some. My metabolic panels have been pristine lately. I mean, NOTHING out of normal range for kidneys OR liver. Funny thing is...I have focal glomerulonephritis (dxd in l984 but probably had it long before that) and four cancerous tumors in my liver....so go figure why kidney and liver enzymes and function tests are all A-Okay!?? The last two panels showed elevation in two liver enzyme tests...but as of two days ago, both those numbers had decreased again to where they were of little consequence. I'm told chemo CAN impact them. So....the question is "What is Normal?" and I guess the answer is...."Whatever is happening right now is today's normal. Tomorrow could be another thing altogether!" So what are we doing standing around here talking about it? Let's head for the pub!!

It could be the liver mets causing the stomach distention. When my cancer relapsed it came back in my liver and pancreas. I don't recall any distention so much as my tummy just felt "unsettled". Not even true nausea. However, the scan had shown nothing and even an ultra sound didn't show what was there. My onc does not do PETs because of the false positives and negatives...he just doesn't like them. BUT....it wasn't till a gastroenterologist ordered an MRCP (also sometimes called ERCP)....which was an MRI of that area of my gut...that it showed FOUR LIVER tumors and MULTIPLE MASSES in the pancreas and pancreatic tail. Not two days prior to the MRCP....the ultrasound showed NOTHING!! Have your brother ask about an MRCP or ERCP...an MRI of the abdomen...as it might show what other tests have not. Best of luck and let us know...and for what it's worth, my pancreas was totally clean after three cycles of Topotecan AND the liver tumors were cut in half...and have remained stable ever since! Pretty good news...all in all, eh?

Val... A thought: in our area there is a support center specifically for cancer victims and their families. They do not have a specific group for l.c. (a fact which jerks my chain a bit ) but they do have a caregivers group which includes everyone and every kind of cancer. They also offer individual counseling which is free. I just wondered if you might have a similar support center in your area where you might find it a bit easier to "fit in"? The other thought I had, is that as a "newbie" in the group...others already know one another AND each other's "story" a little....so it might take another session or two for you to feel more a part of things. I give you much credit for seeking out someplace to share and deal with some of your feelings. It can be enormously helpful...even if initially you feel a bit "out of the loop". I tell you what....you take that gorgeous little girl of yours to a meeting, honey...and you'll have everyone flocking around you! Nobody's grief is less than anyone elses. I understand that the loss of a child is like no other loss (my MIL lost two of three sons, leaving my hubby an "only" by age 14 ) and surely the loss of a spouse is horrendous. But so too, is the loss of one's parent...and in some ways, particularly a mother. My oldest cannot even TALK about the possility that I might die...let alone anytime relatively "soon" (ie: before I'm 197 years of age! ) Hang in there honey...try the group again...and raise your hand and speak out. ASK if anyone else there has lost their mother...and how they coped. That question will open doors...because you can bet, even if it's NOT the most recent loss for others...that a good many of the older folk in the group HAVE lost a parent! Good luck, Val....and report back to us...ok?

Where the helldidja hide the limes, Toots? How am I supposed to make a decent Margarita in your absence without any limes!?? We're doing our best to hold down the fort while you're away...but let me tell you, you're a hard act to follow! My suggestion would be that you haul buns OUT of that hospital ASAP and get back here with some simple answers as to how to fix your shortness of breath and whatever else ails you. Cindi's Pub just ain't Cindi's Pub without ya! Sending all our best your way, hon...holding out expectations of some answers and some fixes to get you right back on track and looking for those dang limes!! Missing you.....

Either a lion trainer, a writer or a chorus line dancer. Instead I became a wife (and have written some, about that ), a mother (similar to lion training ) and a golfer (some of the same moves as dancers make!)

Missed this in my absence too...but what FABU news (as my friend Frankie would say. Frankie is "hip"! ) I'm so happy for you. Great news and a cute hairdo to boot! You've got all the vibes you need for the further testing....but being NED or NERD....who cares which one....is SIMPLY FABU!! This celebration is going to go STRAIGHT TO THE PUB....and no place else~!! In fact, I think I'll go warm up my barstool right now...so I'll be ready for you when the rest of the testing is done. Now that we know it has nothing to do with cancer...heck, I may even start celebrating now. Is that okay with you Kasey? (Not that it matters....I'm gonna go hoist one in your honor anyway! )

Many years ago, BC meant (to me) Before Clairol!! Now it means Before Cancer. How I do it, is with as much humor as possible...and walking thru some of the fear, angst and worry...and then tabling the rest of it until I KNOW I need to worry. So much of the worrying with cancer is for naught...because there are treatments and things to DO for the course the disease takes in us. As long as there is a treatment plan and I basically feel okay...it's pretty easy for me to stay positive. It is always harder in the beginning, Rochelle...so cut yourself a break and cut Mom one too. You'll adapt...both of you. And DO try to do as many "old normal" things as mom feels up to. It's good for the soul!! For instance, if she feels up to a shopping excursion some day, or a movie...or even a rented movie, some popcorn and watching it at home. Whatever she likes to do. I'm convinced that staying as positive as possible helps. My nurses tell me it does. Science cannot measure it's worth...but even my oncologist says that how I look and how I feel tells him as much as the tests do!! If you read my bio...I've had my share of relapses and have been on chemo for about 13 of the last 17 months. I try to look at cancer as a chronic illness. It takes some treatment and some tending...but in actual fact, I don't feel very much worse today than I did when first diagnosed. My energy level is lower, you couldn't hide ANYTHING on my head because it is very bald and I have a little neuropathy from the chemo....but hey, I wake up every day. I shower and get dressed. I've played a little golf along the way and I knit a lot. Plus I like to read and watch tv or DVDs. I even....arrggghhh ....do a little housework. And we go out to dinner occasionally too. Try not to worry too much. Might turn out you didn't NEED to worry and then you'll wish you'd spent that time doing something fun with your mom....huh? Best of luck to her...and cisplatin can be a tough chemo...but there are plenty of anti-nausea meds...so ask questions of her nurses or doctor. If she is not feeling well from the chemo...ask if there is something else she could take to help her feel better and help her appetite in the process. Good luck and let us know how things go.

She's such a girly girl...and those big eyes of hers are gonna break some hearts, someday! Now...how about DonM's little shoulder adornment? That is one cute little guy too!! Would you all like to see my first grandchild? It's a girl!! Tasha is her name.... That's right...that's right. My first grandchild is a German Shepherd. First one who says she looks like me gets a pie in the face. Remember..........I'm bald!!

Dammitall...I'm just finding this after my return from the west coast. Cin...I'd say I'm sorry you're going into the hospital...but I think YOU'D say this is a good thing. Let them just find, once and for all, what all the SOB is about~!! I hope and wish and am vibing that they do. Mucho wisdom for all the docs and techs and whomever comes in contact with you while you're in there. Try not to eat too much green jello, ya hear? Hope you can be in touch while you're "incarcerated" but either way, please know lots of love and good wishes come your way and we hope you get results. Missing you already....

Jen... Not sure how you feel about yet another opinion...but if you have copies of everything...especially recent tests, scans, etc., maybe another opinion isn't a bad idea? So many of the choices we make depend on trust. Who DO we trust? Especially when there are conflicting opinions, it's not always easy to know which doc to listen to and God knows, the stakes could hardly be higher....eh? You're due for a positive break in all of this, I do know that. And I hope you get it, hon. Keep trying to take this one step at a time, asking questions as you go and pushing for some answers. I don't know but what your bowel issues might be solely related to the stress you are under. Just because you have cancer doesn't mean they are cancer-related. You know you stress out over some of this and all by itself that could cause IBS or worse. Many years ago when I was well into Graves Disease but hadn't been dxd yet....I had diarrhea from May to Oct. It is symptomatic of hyperthyroidism and a goiter, I guess. Several meds were tried but it wasn't till they put me on something called TR Opium that it was resolved. Don't know if that med even exists or is used anymore...but ask about it. I don't think there really was opium in it...but what do I know? This was over 30 yrs. ago. Sending you strength vibes, hon....and all my best thoughts and wishes otherwise. Hoping you get some answers AND some relief soon!

Yes it is, sweetie...and may it continue to be for a long, long time. So happy to hear this good news from you.....but really? Not surprised at all! I understand the worry on your part...but from my perspective....you have the right attitude, an effective drug (Topo) and perhaps even a more effective means of receiving it (oral chemo). You're a star, alright. Keep on shining. You light the way for a lot of us!

Joyce... You and Steve are held tightly in my best wishes, thoughts and hopes. I love that you can speak positively for everyone else, even as you face the fact that things are taking a turn for Steve. Hang in there...the both of you, as I know you will...and know you're wrapped in the best that lchelpers have to offer. Keep making memories together...for as long as you can. I'll be thinking of the both of you....

Alas, Beck....I was computerless on the 4th...but it is also the birthdate of one of my oldest and dearest friends....so I should have remembered and posted as soon as I got home. Forgive me...and I hope you had a most wonderful day of celebration with lavish gifts, a lavish cake with your favorite frosting and that whatever you wished when you blew out the candles.....comes true!! Happy Birthday to one of my most favorite and wise "thirty-somethings"~!!

HAPPY FAY-DAY!! Go ahead...say, "Nyah, nyah, nyah, nyah....nyah!!" cuz you're younger!! Hope you get (got?) lotsa goodies and the cake of your dreams and that you celebrated long and well. You deserve it, Fay!!

It's probably fair enough to say that some of us have more time to be here than others. Those with some time constraints may do what I do....which is, to mainly check the General Forum. I have found Ann's daily posts to be enormously fun and comforting...and most of you won't be surprised when I say....IF YOU DON'T HAVE A LITTLE FUN WITH CANCER, IT'LL JUST TAKE A TOLL ON YOU!! I don't think one "fun" post a day takes over the forum. I think these daily posts fit very well into General. To start a brand new forum for fun and games....well, I too visit a couple of other sites. One of them is essentially a board for animal/pet lovers and they must have 15-20 forums by now. Even had one for politics~!! (My dogs are republican....when they're not being "independent", if you catch my drift! ) Anyway...the place is impossible to navigate fully. There is even a forum for RODENTS for crying out loud. The political forum was recently closed because of how intense some posts got...and the fact that some people actually left the site over the posted "ugliness". It was Becky, I think, who said you cannot please everyone all the time. This is exactly right. I think the forum set-up is just fine, our administrators (thank you Rick and Katie) and moderators do a fabulous job....and we all know a little endorphin release is a good thing for us! Honestly, I rarely visit the Just for Laughs forum...again, because of time constraints. So...a little lightheartedness in General is very welcome to me. Hey....Cancer isn't ALL there is in our lives, is it? Not until I look in the mirror in the morning do I remember, most days. This bald head is sort of hard to ignore, ya know? We are all members...and we all have our own ideas, yes. But if I truly knew all about administering a website....I'd probably have my own. As it is....I'm more than happy to leave administrative decisions to Katie and Rick. I think they do an excellent job...and I honestly don't think I'd be upset if they moved one of my posts. Life is too full of OTHER things to get upset about for a moved post to set me off. I mean...how about the fact that every time I leave the den these days, hubby turns the t.v. over to a baseball game? Now THAT is upsetting!!!

When an angel kisses her hand and then blows the kiss your way....it envelops everyone, doesn't it? So glad the day was magical, wonderful, happy and enjoyed by all for the special event that it was. Wish the pic was larger...these old eyes ain't so sharp anymore...but still, I can "feel" the magic of it all. I hope next year, about this time, to be posting one of me dancing with my oldest son at HIS wedding. Now....I might have a wig on...and will let you know if the hair is real or not ...but as you already know, the magic WILL BE real! So glad the day was perfect for all of you....

I'm already on Dilantin....so dunno if my onc would put me on Neurontin too. And he's said I'll be on Dilatin for the rest of my days...probably. I just thought it was an interesting approach...like an old wive's tale, but in this case more an old husband's tale. I've had a small piece of sandpaper near my heel since I posted this....but none on the ball of my foot. Guess where the neuropathy is the worst??? Yup....on the ball of my foot. My feet are like most people's...unless they were carried about on a satin litter ....my feet are pretty tough on the bottom. All those growing up years running around barefoot I guess. I don't think a little sandpaper is going to break down the skin. And I don't intend to wear the sandpaper all the time. Just when it bothers me the most...and to help me get thru the airport on Tuesday. I'll let you know when I get back how it worked or didn't work. But I'm putting another small piece on the ball of my foot tomorrow!

I was tooling around the net trying to get some info on peripheral neuropathy and came across this: Is that not weird? But I went immediately to the basement...tore a wee piece of sandpaper off an already used piece and have it taped to my foot...and you know...I can't say that it's not a bit relieved from how much it was bugging me earlier this morning Anyway...got hubby to find me a full sheet of unused sandpaper and it's packed already, with some paper tape. Hey...I'll try anything (and have already, including icing my foot to *freeze* the neuropathy) to get rid of how distracting this is. Sometimes I'm walking all funky because my left foot is sort of numb and also itches like mad. Wonder if I could line a pair of boot slippers with sandpaper? Ya think? If some of you try this sandpaper method...come back and let us know if it works at all for you. Remember...ya gotta BELIEVE!!!