[Getting to Know You - October 11]

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!)

[Great results!!!!!]

Great news....another NERD in our midst! We love to hear that!!

Congrats and keep up the good work!

[Can You Stand It???]

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! )

[How do you guys do it?]

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.

[For Kasey:]

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!!

[NO Mass....revisited.]

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....

[Joel and I are back.]

Welcome back. Are you walking straight again...or still "listing to port"?

Glad you had such a great time...but even happier that you're back!!

[Tuesday morning check on the brain toasting!]

Am scheduled for a brain MRI on Tuesday morning to follow up on my recent round of radiation. Saw the rad onc on Friday and he gave me the full range of possibilities (which I pretty much knew already )

The largest brain "deposit" (as my onc so cutely termed the tumors ) was only 1 cm. So I'm hoping they are either all gone...or that only some small part of that 1 cm. tumor remains. The radiation continues to work for a while...so eventually I do expect to be empty headed again.

I also start chemo on Monday...going for three days again. (Only had two days of chemo during radiation to give my body a wee break).

Anyway, if you have a positive, empty headed thought to send my way ....I thank you in advance. And while you're at it, if you wouldn't mind...send me any spare HAIR GROWING thoughts you've got too...cuz after TWO separate cycles of WBR...there is a chance my hair might NOT come back in...or will be spotty. Like a poorly fertilized lawn, I guess.

[CTs for Charlie on Monday]

Zeroing in on you guys for nothing but GOOD NEWS results!!

Looking forward to having a celebration in the Pub when you hear...ok?

[Update-I don't even know where to start-its been a nightmare]

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!

[This is good!]

Life is good.

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!

[Difficult update]

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....

[Belated Birthday Wishes for Becky Snowflake]

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 Birthday, Fay A.]

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!!

[On posts being moved ...one person's thoughts]

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!!!

[Returning the Fir Tree pass...]

We are back...as of about 1:15 a.m. this morning. Long flight out. Long flight back. Other than the getting there and getting home part, it was a ball. Two of my "cyber support team" drove all the way from Seattle to come meet me!! Can you imagine? They stayed overnight and we had such fun together. (These are two gals I've 'known' for 5 years thru another message board. They are part of the group of 14 women I asked to be my "cybersupport" when I was diagnosed.)

Anyway...the inlaws were healthier...so we did go see them but spent the night in a motel, instead of staying at the house. I was able to get in little naps or rest periods daily...so didn't wear myself out too much.

But it's so good to be home and my dogs are BESIDE THEMSELVES with joy to be sprung from their kennel life of the past 9 days.

I have laundry to do...and some more sleep to nab before I'll be "human enough" to read thru all I've missed here...so give me another day or two...eh?

I missed checking in on you all...hope everyone is doing okay.

[Pure Magic]

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....

[A really strange tx for peripheral neuropathy]

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!

[A really strange tx for peripheral neuropathy]

I was tooling around the net trying to get some info on peripheral neuropathy and came across this:

Sorry to hear about your symptoms. Unfortunately, Vincristine is well known to cause pretty severe PNs. Don't know what you;ve tried but I can give you a list of things that we used here. First, capsaicin cream (over the counter) burns when you initially apply it, but is supposed to "burn out" the pain fibers giving you some relief. Lidocaine patches and combo ketoprofen/ketamine patches have also been helpful to some patients. Seizure meds: tegretol, neurontin, gabatril,topamax, dilantin, depakote, trileptal have been successful in some people. Elavil and prednisone (lots of side effects) are other possibilities. Biofeedback.

Now this may sound a little crazy, but it's cheap, has no side effects, and one of our patients with post herpetic neuralgia (a very painful condition associated with shingles) is actually pain free with this. I think he was either a carpenter or engineer who accidentally discovered that putting a small sandpaper disk (just a circular disk that he cut from an optimum grade of sandpaper) against the area somehow ??stimulated the pain fibers or anesthetized them. Not sure, but he swears by it.

Hope that helps

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!!!

[Just Call Me Grace....]

My Indian name is "Accident Looking for Place to Happen".

Actually, hubby bestowed it on me years ago. He reminds me regularly that, "Half of coordination is watching where you're going!" I tell him that the whole world hates a smarta$$~!!

I'm sorry about the achy parts and the broken toe, Fay...and suggest you try to look down once in a while when you cross a room...okay?

Many years ago I had a tooth pulled. Later that day I was taking laundry down to the basement and not being able to see beyond the basket, I tripped over a toy one of my kids left RIGHT at the very bottom of the stairs. I went down hard and dislodged the clot from my missing tooth.

I learned then to look down once in a while, even if I have to move a laundry basket to the side...but that does NOT mean I don't bang and bash the liver out of my hands walking thru a door frame OR that I don't regularly whack my funny bone on some part of the open refrigerator door.

I think you and I really just need personal assistants, Fay....to do our bidding and fetch us the stuff we need so we don't have to walk to get it. Doesn't that sound like a great idea?

[Thanks for this year]

Not sure how I missed this one, Fred...but everyone has already said it....your Kasey is a joy around here. Supportive, funny, caring....and you know, the benefits of belonging to this site are pretty across-the-board and mutual. We draw off of one another and I truly believe too, that we all contribute to keeping each other going in this battle.

It has to be nice too, for caregivers to have a place (and their own forum) for finding others who understand and share their experience.

You and Kasey are a great team. She has beaten the initial "odds" big time..and I hope she keeps on doing it for a looooong time.

She and I share something you know....we graduated high school the same year. Us oldie moldies gotta stick together you know~!

Thanks for your thoughts here...and I know that if you COULD toss in a couple of Bud Lites as well, that Frank - at the very least - would be EVER so grateful!

[Getting to know you - Hobby]

These days, I'm mostly down to knitting, reading and making my funky little felt "Don't Worry" and other pins. But I also used to do a lot of applique on sweatshirts, quilting, dough-art (making Christmas ornaments), making felt embroidered ornaments, crocheting and I'm a frustrated writer too~!! Some poetry and limerick writing got mixed in there too!

Oh, and many years ago I made wire and bead jewelry. Mostly earrings. I like handcrafts...especially the "portable" kind you can take with you..like on an airplane or to a doctor's apptmt.

[Returning cabanna girl pass.]

Uh....Frank? It's not the beer and donuts that's the problem...it's that the donuts were CHOCOLATE. Glazed or plain donuts would have been fine. Beer and chocolate aren't the best combination.

However....it's impressive all the physical exercise you got in on the vacation. Wow!!

And I'm tickled that you had such a good time, other than all the pit stops on the way home! Welcome back!

[In need of the Frustrated Fir Tree pass]

We are headed west to Oregon on Tuesday for a week...explaining the Fir Tree part of my requested hall pass.

My inlaws are part of why we are making this trip and both of them have been sick with some respiratory junk FOR A MONTH NOW and are still sick! Of course they haven't been to the doctor because, as MIL informed me, "They won't give you anything unless you have a fever!"...so they've been relying on cough syrup to fix them. Did I mention she hacked her way thru the whole conversation?

Dang!

That explains the Frustrated part, I presume.

If they are not healthy by the time we expect to go down to see them...then hubby will go, and I'll stay up north. It's not worth it to me to expose myself to I-don't-know-what in stereo...and they've known for a while that we were coming. Go figure.

So...Ry...if you don't mind, the Frustrated Fir Tree ought to do me just fine. Thanks.

I'll miss y'all. Don't think I'll have internet access while out there....but just make sure nobody gets too comfy in my barstool at the pub, because as Arnold says, "I vill be bach!!"

[Getting to know you - September 22]

Ry nailed one of mine...

1. Sullivan's Island

2. Triplets

3. The Horse Whisperer

But that's only the short list.