Addie
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Jane...
Oh, I'm so sorry for what you're going through..but I bet a lot of the emotional stuff is tied to the steroids.
Today is day 4 for me of brain radiation...but since I had PCI last November, I am getting lower doses. I too have a "head full"...both hemispheres and in the cerebellum in back. I wasn't/am not particularly symptomatic either...these were found seredipitously by MRI.
They started me on 8 mgs daily of Decadron..which I now find out is a HALF DOSE
I was a crazy woman...and one who wasn't sleeping. I'm now cut to 4 mgs. and doing much better...but still showing some signs of Decadron Craziness and still not sleeping all that well.The thing is...I refuse to buckle under to this stinkin' disease. I keep putting one foot ahead of the other, leapfrogging as much of the fear or angst as I can...and trying to enjoy my life to the extent my physical abilities will let me. Yesterday, I even played 9 holes of golf with my hubby!
Funny you mention a cough...as I've had a throat tickle and cough lately too. Not major...but new...and yet my very recent CT scan shows nothing. I'm stuffier when I get up in the morning too...sort of sinus-y like you say.
Please hang in there Jane! This radiation may well have wiped out ALL the little buggers in your head...as I'm hoping will happen with me....and thereby giving us lots more time yet to LIVE and enjoy doing it.
Okay...so maybe we'll never feel quite as healthy as we did pre-cancer...but there is still some quality of life to grab and enjoy...so let's you and I plan on doing just that, okay?
I keep telling myself...maybe the steroids and brain rad. will sharpen my sense of humor and I'll take this act on the road. I could be the first female, BALD comedienne...huh? People used to tell me I look like Carol Burnette....so why not?
Keep us posted, Nana...and for now, just rest as you need it. When you're up and about...push yourself a teeny bit and soon, you'll be feeling lots better.
Thinking of you as I head back under the "toaster" today.
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I've looked everywhere and cannot find where it says Missy Fay is going to have to spend a MONTH in ICU
But I did figure out what ICU stands for. You ready?
INTENSIVE CHICKEN UNIT!!
Knowing our Fay...it won't end up being a month. She'll drive them up a wall trying to get sprung, won't you, Fay?
Lobbing eggs into the bedpan across the room...gluing feathers on the doctor's lab coat as he leans over the patient in the next bed...hollering "C*CK-A-DOODLE-DOOOOOOOOOOO" every morning promptly at 4:45 a.m...screaming, "OMIGOD, IT'S COUSIN GEORGE!!!" when they serve her one over easy for breakfast.
Oh, no....Fay won't be there a month. They'll knock themselves out to get her up and running so they can send her home!!
And can we blame them? She'll be the only patient in the hospital with a chicken-yellow school bus parked in the ICU lot, full of loud and wild misfits wearing plastic wattles around their necks, eating pulled pork sandwiches and waddling up and down the hospital halls at all hours of the night and day!
Don't get too comfy, Fay. The nurses are dedicated to getting YOU (and US) out of there ASAP!
(Edited to add...as I laugh my a$$ off, that when I submitted this...apparently A-DOODLE-DOO is alright...but the first word in what a rooster says is "Word not allowed".....so I had to insert an asterisk....all the while chuckling like a....well, like an old hen
.....over...."WORD NOT ALLOWED-A-DOODLE-DOO!! 
)Don't ever say the censors around here don't have a sense of humor, folks!! Or maybe everything just seems funny at 3:11 a.m., eh?
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Had PCI last November, 13 txs. Just started WBR (reduced dosage, same as PCI) and in just days, I am noticing my vision is fuzzier.
Actually, it was a bit fuzzier before I started this round of rad from the tumors, I suspect. But the rad is making it more noticeable.
Along the way since original dx, even chemo has affected how easily I am able to read and for distance too, when I drove...but I'm holding out too on new glasses. Need to go get another pair of those cheap magnifiers at the drug center.
I can still find the caramel filled Milky Ways...so I figure all is not lost yet
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Freddy the Frog and Henrietta the Hippo? Please tell me someone does and that it is not all just a mirage from my childhood.
Now see....this is how I feel about the cowboy, Johnnie Mack Brown.
Everyone remembers The Lone Ranger or Hopalong Cassidy....but who remembers Johnnie Mack Brown?
And....I sorta VAGUELY remember Henrietta and Freddie...but I think more from books than t.v. But....you're younger than I am too.
Isn't just about everybody? -
I write mostly, too. Till I get my venom to a reasonable level...and then sometimes I send the letter!
Mostly I don't though....the writing is just a good purge. Or I vacuum or scrub "terlets".
Some form of housework to work out the physical energies of it all.This is a timely question, because an idea for a post has been tooling around my slightly Decadron-influenced brain this morning...and I'll probably post when I get back from radiation. You'll see then, what the link is to today's question.
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You're showing your youth, Becky.
"Dinosaurs"???? The only dinosaur I know of is that more recent purple, irritating, overstuffed dinosaur that can make me change a channel so fast you don't even see my fingers move! Bring back Alf, Knots Landing and the Electric Company for kids. Now THERE were some shows!
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Like Amie, I found the first recurrence far more scary than the original dx.
Now I'm on my second recurrence. I wouldn't exactly say I was blase about it
but it does strike a chord for the "treat this like a chronic disease" sort of setback. I just keep moving forward with treatment...and hope you and your mom can do the same. Topotecan, as a second line tx for l.c., seems to be very effective. Several here are having good luck with it, including myself. It's tolerable and cleaned out my pancreas, reduced liver tumors to half their size and has held the liver stable ever since.
Best of luck to you and Mom....and don't give up hope...there are things yet to be done!
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Great letter, Gail!!
I feel like "Johnny Come Lately" to this post...but I was just inspired myself the other day to write one on behalf of all those with l.c. I don't normally have/take the time to check this forum too often...but am getting to where it seems more and more important to DO SO! Am glad I saw this.
Your letter was well written and I applaud you for sending it out to so many. Surely someone will listen?? It's about time someone (they ALL?) did!
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As you well know, dearie...I'm so pleased that the oral Topo is taking such good care of you...and that you continue to feel well.
Such a little experimental project, you are! Granted, you're a few cycles behind me and taking it orally as opposed to infused....but let me know if/when you start noticing any itchy neuropathy in your extremities...will you? My left foot (why does that sound like a movie?
) is giving me FITS. Itches to where I want to stick my foot in a paper cutter and lob it off. Left side and sole of left foot and the ankle. Itches all the time. Benadryl helps and benadryl cream....but not 100% -
Just spotted this thread....in a rush...gotta go pack, but I'm dressed for the occasion.....
SEE YOU SOOOOOOOON, FAAAAAAYYYYY!!!!!!!!!!
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First thought....when my mother was diagnosed 20 yrs ago with colon cancer...she was a bit of an ostrich about how serious it was. It has already spread to the liver and lymph system....and her oncologist gave me what I think is VERY GOOD advice, which may apply to your mom as well.
He said, "People will absorb as much as they can WHEN they can!" The point was to NOT force feed my mother the details of her situation. She'd start to "get them" as she was able.
My mother too, told her best friend, after surgery to remove part of her colon, that she, "Doesn't have cancer anymore. (She) just has *spots* on the liver".
Catch my point? Those spots were tumors. Mom wasn't ready to face that then...but later on, she did accept that she still had cancer. We let her come to it all in her own time. She lived 2 yrs. 3+ months with her cancer and this was a long time ago! Maybe her oblivion to some of it kept her around longer...who knows?
Now...from that example....I have small cell l.c. too, limited when diagnosed about 15 months ago. You can read my bio below....but I'm now on my second relapse and it's in my brain. I started radiation yesterday.
Statistics on the internet are DISMAL. I decided up front to ignore them, and rather just search for information about treatments, what to expect from chemo, etc. You don't have to tell your mother EVERYTHING you read and find out...because if she really wanted to know, she'd be sitting in front of the computer herself, wouldn't she?
But you can learn things that will help her get thru treatment....like drinking lots of water, staying hydrated. Also, keeping her appetite up and eating protein daily during chemo, as that is what rebuilds healthy tissue. If she doesn't have much of an appetite...then let her eat whatever appeals to her...even if it's only ice cream and Fruit Loops! The point is to keep her weight and strength up.
I'm sure you'll find it tough having to hedge the full truth of some of this...but you know your mom best and between you and her onc, you should be able to determine how best to help your mom through this while allowing her to maintain some hope.
Without hope, I don't know that any of us would survive this stinkin' disease...but other than spending a lot more time at my doctors, or masked/strapped to a table getting my brain toasted...my life isn't all that different than it was pre-diagnosis. I still play golf a little, I knit, I clean house (only when I can't avoid it any longer, though
) and other than being bald...people tell me I look and act the same!Tell your mother to think of this as a chronic illness...nothing worse. You treat it as needed. Stay as positive as you can. That would be my BEST advice.
I hope some of this wordiness helped. I'm on steroids these days and it makes me.....ahem....chattier than usual!
Best wishes to your mom and you...and let us know how things go.
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Such an expressive little face. I betcha she's your mom's BEST medicine!
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Lately? Potstickers or Chinese dumplings, if you prefer....and gazpacho!!
We have tomato plants in pots on our deck. Not terribly productive yet...so yesterday a friend...a single fellow with several "in ground" tomato plants brought me a bag full. They are SOOOOO sweet I could eat them for all three meals a day.
I also like fried chicken and pizza and salads and baked potatoes with everything and cheese and crackers and clam dip with Ruffles (which have ridges~!
) and angel food cake and key lime pie and ice cream and Chili's lettuce wraps and Thai chicken satay and potato salad like mama used to make and....and....and...... -
....but today I got an email that inspired me. It was from a company where I once ordered a charm. Here is the email:
Dear Valued Customer,
As most of you know October is breast cancer awareness month. We would like to do our part to bring awareness to this deadly disease. So in honor of the survivors and in memory of lost loved ones, with the purchase of a sterling silver pink ribbon pendant,our gift to you is a sterling silver chain, item BOXCCS.After making your purchase and checking out, in the comment section let us at http://salesboost.sitetoolbox.com/sh/st ... ibbons.htm know what size box chain you want. The Five Steps of a Breast self Exam.
Thank You
T Brown
And here is my reply to them:
Dear T. Brown:
You may not be aware that following October's Breast Cancer Awareness month, November is Lung Cancer Awareness month. I have lung cancer.
While I am also a female who has been having annual mammograms for the past 16-18 years, and even as I am grateful for the increased attention to and funding for breast cancer and strides made in treating breast cancer...those with lung cancer are, by comparison, not near so fortunate.
For one thing, it is supposed that we "brought this disease on ourselves" by smoking. That stigma alone has caused the amount of funding for lung cancer to be approximately 10-11% of that available for breast cancer research, and yet lung cancer - annually - kills more people than breast, prostate and colorectal cancer COMBINED!
Lung cancer, more and more, is affecting those who DO NOT SMOKE (having quit many years prior) or HAVE NEVER SMOKED. Evidence: Peter Jennings and Dana Reeve. It's not just smoking that creates the risk. Genetics, environmental factors and perhaps even estrogen has an impact, since lung cancer is striking more and more women. There is some question too about thyroid issues and a connection to lung cancer. Second hand smoke and even the fumes from gas grills are suspect. Many questions...but not enough answers yet to save more lives.
I am happy to support breast cancer awareness and funding. I wish everyone else was so happy to support lung cancer awareness and funding.
I hope this letter catches the attention of someone in a position to DO something that might help the 160,000-some people who will be diagnosed this year alone, with lung cancer. I invite you to please visit the lung cancer support community at htpp://lchelp.org/ If you read a little there, you will find that those of us with lung cancer are no more deserving of cancer than anyone else...yet the stigma that attaches to l.c. puts us low on the list when it comes to research, attention and sympathy.
I am a former smoker, not that that should make a difference....but it does, in the minds of many. As a company, you might be in a position to change that attitude AND make an even bigger difference for even more lives.
The lung cancer ribbon is clear. If you were to make the same offer in November that you're making in October to support breast cancer awareness...at least two thousand of my "friends" at lchelp would be very grateful.
Thank you for any consideration you might give this request, and also thank you for supporting Breast Cancer Awareness.
Sincerely,
Let's see if it produces any results....eh?
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60 mgs of steroids??
I can't even imagine.The thing is, I tolerate prednisone pretty well. 30 years ago, I was on 20 mgs. daily for a series of eye surgeries...with NO problems.
I was on it up till they put me on the Decadron...for polymyalgia. Started at 10 mgs and have slowly worked my way down to 3 mgs. daily.
I have to just hope that this 4 mgs. of Decadron does NOT need to be increased (ever!!) and that weaning off of it won't be too horrific.
I'm one of those people that reads the pharmacy inserts, looks up side effects on the web, pays attention to drug interactions (I even have a book on drug interactions I got from Reader's Digest
), etc. And I take nothing that I question before those questions are answered. Well...except for chemo. I was really cranky the beginning of last week. I do NOT like myself like that...and I told the rad onc on Thursday that if HE didn't do something about my dosage, I would TAKE MYSELF OFF THE CR*P AND GO BACK ON PREDNISONE...expecting him to tell me what dosage to take!
My hubby was sitting right there and said, "Either that...or I'LL KILL HER MYSELF
I appreciate the heads up on what I might expect when I CAN wean off this stuff. Maybe if they transition me back onto the prednisone....I'll get through it without having to spend any time in the Danbury Correctional Institute, eh?
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Thanks to Rich and continued good thoughts and vibes to our FayA. Hope you're up and well enough real soon to chase that cute intern down the hall a few times before they send you home
Hang in there and don't eat anything that still has a thermometer in it!
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Sue..
The road to recovery and even the road to "hanging in there" isn't always easy to navigate, is it?
So sorry Mike had SO much trouble with the steroids. Bad as I did on 8 mgs the beginning of last week...I found out yesterday that it was only a HALF DOSE! Standard dose is 16 mgs. I'd have been jumping off buildings with a hanky as a parachute hollering BONZAIIIIIIIIIIIIIIIII!!!! I hope it turns out he can handle the Tarceva. I know we read a lot here about the rashes and such...but maybe a lower dose will work for him without all the side effects. THINK POSITIVELY!
There is benedryl type anti-itch creams too...if that would help. I have some sort of itchy neuropathy on one hand and one foot/ankle. Drives me nuts at night, especially. Benedryl cream also helps sooth.
Thanks for the update..keep us posted and you two hang in there.....
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We probably will not get the results until next week as we will be away from Wed. thru Sunday.
MA....call in. Ask the onc's nurse or receptionist to call radiology for a "wet read" to be called in to the onc. This is where the radiologist gives his first impressions....without all the details, often in written (albeit brief) form.
This is done all the time here. I get results the same night as I had a scan done that afternoon!
No reason to wait a week, even if you're going away if you don't WANT to wait that long.
But....do have a lovely time away. I'm looking forward to a trip west next month or early Oct. Can't wait. Hope you two have a great trip!
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by the way, you do need a new hat person and send your new DIL to them too.
My new DIL? Oh, do you mean the Rottweiler? She doesn't go to a hat person. We send her, on a somewhat regular basis, to Petco for a new collar and leash.
I'm off now to select my fall collection of hats with matching handbags. Charlie is off to the toupee maker for some new rugs.
Ta for now. Cheerio, pip-pip...and can someone (Geri??) explain why British men wear nothing under their kilts? Is it a matter of air conditioning?
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Well, I've had my share of thyroid adventures...but never a nodule.
I'd say...just let them keep an eye on it, go with the general consensus which seems to be that they tend to be benign....and otherwise, Charlie...just...
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.........................GIT R DONE!
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Joel's got 'em...no question.
And you too, so you won't be worryin'.
Be sure to keep us informed so we don't wear ourselves out....ok?
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Oh, go ahead....do it.....get in some trouble. I bet you'd be really, really good at it, Missy Fay
So glad you're nearing getting sprung. To be home in your own bed at night, using your own (not so institutional looking, I'm sure) bathroom and eating food that is actually edible. Ahhhhhhh....the possibilities.
Keep on doing well, dear...as we do miss your wisdom, humor and input.
Thinking of you daily and sending out good thoughts.
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In an odd way...they were all good. I got the news of brain mets the Friday before...so that wasn't a particularly good day.
But Monday of last week...I found out my liver is still stable (that's a huge "Yippee Skippee") and then on Thursday, which so many of you mention...I met with the rad onc for the "game plan" and sim. That was good too, as having a plan is ALWAYS good.
The other days, I got some housework done and other than a rather profound lack of sleep due to The Evil Decadron...I had a blast posting here in the middle of the night.
It was especially nice to check back later at what I'd posted and see that I hadn't been TOO raunchy. (In the privacy of my own home, Decadron had turned me into a potty mouth.
)Anyway...in a sentence....every day last week was good, because I woke up once again and had the opportunity to live that day, part of them spent here - with you guys!
I was a crazy woman...and one who wasn't sleeping. I'm now cut to 4 mgs. and doing much better...but still showing some signs of Decadron Craziness and still not sleeping all that well.
)
Isn't just about everybody? 
So sorry Mike had SO much trouble with the steroids. Bad as I did on 8 mgs the beginning of last week...I found out yesterday that it was only a HALF DOSE! 
)
Brian's update for Aug. 25
in GENERAL
Posted
Bri....you give yourself those shots (Neupogen, I'm presuming) and then see how the counts look next week. Only a week won't make a huge difference.
Do you get Procrit or Aranesp too, for the red cells. How are your platelets?
You must not be low enough to require transfusions...and that's a good thing, although getting the t-fusions really brings the #'s up fast. Red cells, hgb and hct, that is.
I get Neulasta the day after I finish each chemo cycle. Just one shot every three weeks....so not the daily shots like you have to do w/ Neupogen. Why not ask Bri's onc about Neulasta?
Meanwhile, our little Brat Pack of Two...you know you have every good vibe and wish of mine for Bri to feel better soon and get back on the chemo.
You know...sometimes I find bowl of vanilla with caramel sauce SO therapeutic. Bri...do you like caramel?