Addie
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Had another cute doc, which is hopefully not the only requirement for employment in this ER! Helps pass the time though.
Anyway, this is hopefully the final episode in this ramble and my breathing issues will soon be a thing of the past...all the memories of past pneumonitis will go back where they belong and all will be well.
For crying out loud.....don't I have ENOUGH on my mind these days without worrying about you and whether or not Dudley is taking good enough care of you?
I think you're probably just fine...but in search of all the cutest ER docs you can find in New England. What....are you doing a coffee table photo book or something?
Seriously, my friend...please lay low now...take care of yourself? Get well and be strong. Get those lungs cleared out ASAP.
You know my thoughts are up there with you...right?
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Jeezum, Jim....by the title of this post I was afraid you had lousy news....and I even said, "Uh oh" out loud!!
Then I open the post...and it's a FEEL GOOD post. I love it!!
I'm so glad you're doing better, went fishing and even found something to wear that helped cool you in this heat. So...what's a little taillight assembly problem with all that other good stuff?
I am now sort of heaving a sigh of relief at YOUR good news, hoping that in a few weeks, I'll have some of the same.
You rock, Jim. You clearly know the meaning of "Life is to be LIVED"....however an individual defines that. And YOU, my good man, define it by the number of fish and having a special grandson in your life....I know.
Keep on rocking. You inspire.
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Anyone remember the t.v. show Alf? Gawd, how I use to hoot over that silly sit com.
Alf was from Melmac, remember? And it was acceptable on Melmac to eat cats. (No offense to cat lovers here....please...this is fiction!)
So one day, Alf is in the kitchen and he hollers thru the passthrough to the mother of the family he lives with...
"Hey, where's the casserole dish?"
Mother replies, "Why do you ask, Alf?"
Alf says, "Cuz the cat won't fit in the toaster.
HAH!!"
Today...I'm Alf's cat! Heading back into the toaster.
I don't know if it's the reduced dosage of Decadron or the fact that it finally hit my system like you all say it's "supposed to" and I went on a cleaning binge yesterday
...but I slept pretty well last night...and I'm really optimistic going into this next round of radiation.I think it was Hebbie that posted an article down in LC in the News about a woman who survived Stage 4 lung cancer. In it, the woman said she laid on the rad. table and would whisper, "Get it, get it, get it, GONE!" She would also holler, "NO!" at the cancer.
I'm gonna try that this time. Been doing it already, actually. I walk up the stairs here at home, chanting, "NO. NO. GET OUT. GO AWAY. NO!"
My dogs aren't sure what to think...but I sure hope the cancer is getting the message!!
P.S. For those who loved the Alf show as much as I did....here's another one for you.
Alf calls up an Oriental Deli to order a sandwich, and says....
"Gimme a Siamese on Rye and tuck in the tail!"
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Kasey...
I already had spondylosis (arthritis, in effect) in my neck/upper spine. And I have some degenerative disc disease in my lumbar spine.
Radiation for my lung was nearly dead onto my spine, front AND back for 23 days to get the cancerous lymph nodes...and then they changed the "field" of radiation.
I don't have back problems in the middle of my back, per se....but there is some damage that shows up on CT scans FROM the radiation! And sometimes...I get this mild discomfort in the middle of my chest and it's hard to tell if it's coming from the front OR back...but it's very close to that area that was radiated.
So....I guess my answer is......it's possible that the radation could cause some late effect back pain.
But I guess it's equally possible that it could be coincidental to rad...and just a matter of (sorry, honey) our bones getting old.
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Leave it to you, Frank, to come up with a beer guzzling ditty!
You're too much!Ya notice how none of the 'girls' have shown up yet...but you and Don came to share a ditty?
Our women here are dittyless, it appears.
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This program was brought to you by Decadron....the Steroid of Queens.
And......probably the other burroughs too!
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Thanks for the info, Bill. All you gotta do is read my long, ranting missive of Wed. night (I think it was) and there's proof for your pudding that higher than necessary doses get prescribed.
Mine was cut in half. I'm 100% better but still not sure I need even 4 mgs. daily. I see my onc tomorrow after radiation (he prescribed but it was the rad. onc who cut my dose last Thursday) and I intend to revisit this whole Decadron/Prednisone issue and see what we might reasonably try.
I'm still not particularly symptomatic of brain mets, which is not to say there isn't SOME swelling. I think the first couple of rad doses may be on the lower end..and then they might increase dosage of cGrays a bit...IF I understood the rad. onc properly.
So...my layman's brain tells me that as the dosage of cGrays increases, so too might the swelling...EVEN AS the tumors begin to shrink.
We'll play it as it comes, I suppose. I don't relish the notion of headaches...but neither do I relish the notion of swinging from the entry hall chandelier singing old Neil Sedaka tunes while trying to lob Hershey's Kisses thru the mail slot at 2:30 in the morning.
And trust me...the above scenario is NOT out of the Decadron Realm of Possibility!
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Don't muck with the queen, ladies...it could come back to bite ya!
Make nice and you can just call me Liz.
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Here I am at Royal Ascot. Philip always loved me in pink.
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Of course you all understand that my TRUE identity is the Queen of England....right?
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Amie means "friend" in French, doesn't it?
I think it's an entirely appropriate name for you, Amie!
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How come you always get the young, cute doctors, Geri?
I'm glad to know you acted fast and got some help for your breathing...and boy, I think anyone here can understand that no matter HOW far out you are from dx....that the Ugly Thoughts are still gonna be there...eh?
I'm glad you refused to dwell on them and rather, passed them on to the "recycle bin".And how fun to see the doc's reaction, I'll bet. I keep hoping to emulate that someday....to be able to shock the peewaddens out of some medico by saying I'm a four year (or plus!
) survivor of small cell lung cancer...and Yes, this is my real hair and No, I didn't kill even ONE person during The Steroid Weeks! You and Cin both have had such great doctor experiences lately...that I hope it sets a trend for everyone. Old doc, new doc....I don't care....I just want EVERYBODY HERE to walk out of a dr's office or an ER with a smile on their face, like the two of you did!
Stay well, my friend....and remember, you don't get SOB typing emails!
Love you....
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In rhyme. Add your own, if you wish.
I came across this little ditty, done in calligraphy when I was in high school art class.
Can you spell "antique" boys and girls? I have no idea of the source of this wee poem, but I love the spirit of it and am going to share....
You have to believe in happiness, or happiness never comes.
I know that a bird chirps none the less, when all that he finds is crumbs.
You have to believe the buds will blow,
Believe in the grass in the days of snow,
Ah; that's the reason a bird can sing,
On his darkest days, he believes in Spring!
Here, we believe in Spring too!
Got another cute ditty to add?
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Oh, man, Cindi.....whatever remaining pent-up energy I have...I just exhaled it, reading your post.
If you were here, I'd not have to say a word...because you could see my reaction to this in my eyes. I'm SO pleased for you...that you not only had the wisdom to go back and see this surgeon...but that he held you up again, rather than letting you down.
Wow. He sounds like such a terrific guy...and his staff sounds equally good! And what a compliment to ask to to speak to other patients. I mean, nevermind how well you've gotten along...he asked because you have other skills to carry this off. Not every patient would have those skills!
Keep riding this high, Cin. It's deserved and it's so nice - despite all - to "hear" you smiling.
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.....using up our precious energies on them!
Been doing some thinking about the recent two posts by a new member that got my ire a bit stirred up yesterday. I'm not convinced that this person isn't a troll...come here to stir us ALL up and enjoying the reaction. I guess if she disappears like that married couple did a month or two ago...we'll sort of have our answer, huh?
The pot stirring was fairly well done, I'll give the person that, despite a lot of spelling errors. Seeming to care about her uncle and all of us, making sure to make those appropriate noises...while simultaneously criticizing and judging all of us here for our dishonesty and the fact that we're "all" still smoking, as she was apparently forced to "assume".
Another member and I were PMing each other during all of the posting yesterday, and we both agreed that sometimes "a good emotional release" comes from something like this...when some (and I use this term kindly
) jerk stirs the pot!Well, it sure worked for me. Talk about a spigot on my Decadron High????
But still...it is an unkind act to come in here and mess with OUR sincerity...isn't it?And it still remains that IF this was an actual troll...that collectively, we need to watch out for them....because they really can sap energy...which sometimes is better used in our fight against cancer, huh?
If we think about it...there are only so many topics related to lung cancer, specifically, that would fire up the crowd here. Smoking or continuing to smoke after dx surely are chief among them.
As many of you know, I'm still getting chemo and I head back into brain radiation on Monday. Life goes on in many ways...but I don't have the time these days to visit as many of the forums here as I used to...so I miss some things, sometimes.
I'm picking my battles more carefully these days...but this one...the post I responded to yesterday with "problem" in the title (and in this forum, for those who missed it
)was a doozie and it WAS a release for me to speak my mind.For those who don't have the energy...it's fine. Decadron or not...I guess I'd rather counter a nasty attitude than dust, you know?
But my real point here, I suppose, is that sometimes with newcomers...when they come into our group with both barrels blasting about what WE are doing or not doing...and seem to have the intention of "fixing" us...I say we need to consider what Troll Bridge the person may just have crawled out from under, before we welcome them with open arms.
I think it takes a hideously sick mind to taunt and toy with people battling cancer. I wonder what goes on anymore in our culture that helps produce such sick minds.
This all is not to say that some newcomer cannot show up, be a bit mouthy at first and NOT be a troll.
But it IS to say that we all need to keep our radar up...because otherwise, we are a perfect, sincere target for some people out there who are a total waste of human components and without any compassion.
I care about my family here. That is the real purpose of this post...and I know y'all know that. And when I say that....I ain't just whistling "Dixie"
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Aw Mel....It's so good to hear from you....
In 10 months I've had lung surgery, chemo, 2 brain surgeries and 20 WBR treatments, plus lost lower quadrant of vision. So needless to say, it's all catching up.Addie, I have been on Decadron since, now sit down 'cause this hurts, since APRIL!!!!!I have gained over 25 pounds, I have extrememe swelling/edema in feet/legs well really, everywhere. But that's part of the fun of steroids. You swell everywhere except the brain, which is why you're on them. After long term, you develop Cushing's Disease, th huge swollen cheeks, huge fat deposits on neck and upper back, muscle and bone weakness. Steroids are not a laughing matter, I really had no idea how bad they were.
...but what a horrific picture you paint of the steroids. Oy gevurtz....I sure hope I don't have to be on them for months. I wonder if your brain surgery necessitated the longer regimen? And a question...was the brain tumor a different type of cancer than your lung lesion?
You've really been through it....but you know what shines through your post and makes me smile? Your humor and the fact that you're looking forward to getting that china cabinet done! You go girl...
I'm significantly better now on the lowered dose of 4 mgs. of Decadron daily...but still sleeping only fitfully and only every other night. Still, I'm grabbing enough sleep to remain reasonably human...although nobody is asking me to cook too often or hold their pork chop OR butcher knife for them!
My first time with brain radiation (PCI) I just remained on the prednisone I was already taking. 4-5 mgs. at the time, I don't quite recall. Never had to up the dosage...did fine. But I guess THIS time the symptoms could increase NOT just because it's the second round of brain radiation...but because the brain swells around the tumors themselves. And I've got 'em in both hemispheres AND in the cerebellum in back of the brain.
I tend not to struggle too hard with side effects...and that has been the case from day one, with this disease. Can't tell you why...other than luck. BUT you can bet your bippy I will be OFF this freakin' Decadron ASAP and back on prednisone to hold things in check. I'll insist on it.
I've been on pred since 8/2003 and haven't gained but maybe a couple of pounds. Face looks a bit jowlier and fuller...but hey, I'm nearly 60. I'm not supposed to look like Jennifer Garner, am I?
I sure wish I could wave a magic wand and restore all your energy for you, Melanie....but don't let the cancer buggers rob you of your spirit, which is intact and incredible! It was so sweet of you to pop in and post your commiseration re: The 'Roids.
Kinda makes you wonder why they can come up with prednisone, often touted as a real "miracle drug" in that it helps or corrects so many things...and yet Decadron, as "sister steroid" to the pred. is a miserable, sleep-robbing, face-puffing, weight-enhanching tiptoe thru misery, doesn't it?
Hang in there, Melanie...and I intend to do the same. I'll let you know how it goes...if I'm not sitting in a corner somewhere stuffing doughnuts in my face and trying to count the dimples in my puffy neck!
DON'T LET 'EM GET YOU DOWN! I want to see a picture of that china cabinet when you finish it....okay?
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Hands down....Dirty Rotten Scoundrels with Steve Martin and Michael Caine. There is the most hilarious scene at a dining table with a fork, a cork and a request to use the baaaathroom.
And Rob Schneider in Deuce Bigelow, Ace Gigolo (or whatever the actual title was) was a riot and a half.
Now...this is not a movie and I dunno if it can even be found anymore...but The Best of Gilda Radner from Saturday Night Live is classic. And the other night on tv I caught The Best of Chris Farley from SNL...and I betcha that's available in video or DVD.
If I think of more, I'll come back and add on....ok?
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Peggy...
Just step into my open arms here, and let me hug you.
That's all. You know what's in my heart and thoughts...and it's just nice to hear your voice again.
Your letter and Mike's were both just right. Just right, full of love and honest emotion.
I will look forward to your checking in here..whenever it feels right to you.
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If I had to make a choice to live longer or die smoking there would be know choice unless I was on to many meds to make that decision then I would hope my family and friends would do the right thing and not let me smoke it is called tough love. I use to smoke for 10 years and it was hard to give up I really never had a reason to do it but my god if I had Lung cancer it would be the first thing I did.
I missed responding to the above paragraph the first time around...but it seemed important to come back and address the fact that you're a former smoker.
Do you understand you are still at risk? That having quit or not...you could still end up with lung cancer some day?
I just wanted to say that IF you do end up with lung cancer...I hope - sincerely - that there isn't another member in your family or circle of friends that decides to rag your fanny for having smoked for 10 years!
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Excuse my bluntness....and this comes from someone who QUIT SMOKING FOUR DAYS BEFORE I WAS DIAGNOSED AND STILL REMAINS SMOKE FREE AS DOES MY HUSBAND....
....but who died and put you in charge of things?
Your attitude is extremely superior. You come into OUR HOUSE here...a lung cancer SUPPORT community...not a place of judgment....and you judge us!
So everyone that answered me except for one man who said he gave it up should I asume you are all still smoking. So let me see how many of you can come clean and tell it like it is. I have read so many things on this board regading so many different things but no one is really talking about stop smoking. You would think it would be talked about alot. I think you guys hide that dirty little secert but then on the other hand you all say nobody cares about this diease well I can see why.Why must anyone "come clean" with you? Just because you want to insist on it? What makes anyone's business or habits here, YOUR business, other than that you seem to feel entitled to ask? And in any event, this is...I repeat...A SUPPORT COMMUNITY FOR THOSE WHO HAVE LUNG CANCER. It's not a smoking cessation site, where I bet they do a lot of talking about stopping the habit. Why don't you find one of those places and inflict your vitriol upon them?
I am very caring and I love my whole family but I guess I am the only one who will say it like it is and it is horrible that you all want help and support from your family but you keep smoking. Yes I know it is my job as a family member to be there and care and I do. I don't talk about this to him all day not even once a week but I know he knows what he is doing is wrong.You may see yourself as caring...I see you as judgmental and you also sound very young to me. Like teenager young or perhaps just slightly older. But not fully mature, because I think if you were, you'd see the error of your attitude. If your uncle knows what he does is wrong...then leave him alone.
Right or wrong, he has the option to choose for himself and being judged by you isn't going to change that.
Again thank you all for replys but nobody really came clean and told the truth so I am thinking that you all are to ashamed to say yes I am still smoking and I see no problem with it.And you know this how? You know that "nobody really came clean" because you're psychic, too?
I am thinking of you all and hope that one day this site will no longer be up and running meaning that they find a cure. I think this has to start with telling people to put down the smokes and who better to let people know then you guys. Go to your local schools and share what you are going through and know that you did something to help someone eles from getting this diease.Oh, so now you don't just want to judge and try to shame us...you want to tell us how to live, too? To go to schools and talk to students? How do you know that nobody here does that already? And how about you going to donate your time to speak of the evils of smoking? Why don't YOU do it? As for me personally, I'm too busy right now with chemo and radiation..but when my time frees up a bit...how do you know I won't go speak out?
1. People that have heart attacks we don't give them fattey foods.2.People with diabetes we dont give them sugar
3.people with lung cancer we dont give them cigs
What's this "we" stuff, Tonto? Are you now in charge of the World Food Bank too? What we actually DON'T DO...is we don't have the GALL to go up to someone with heart disease and badger them about how many Big Macs they ate that week.
We don't go up to people with Diabetes and accuse them of keeping an Angel Food cake under their bed and sneaking slices all day long.
And if you really want to rail on who gives people with lung cancer cigarettes...then start writing the tobacco companies over how they lied to all of us for years in order to get us hooked. Over how - even now, with more adults quitting - they are targeting teenagers. Investigate the power of the tobacco lobby and all the money they have.
And then start looking into how much money is spent on researching new treatments for lung cancers compared to other cancers...if you really want something to complain about.
I fully realize that the tone of this post is angry. And I am not an angry person...but for a bit of steroids coursing thru my system at the moment....not that I owe you any explanation, as your posts have been pretty angry themselves.
Maybe because the internet is "anonymous" and your uncle and probably the rest of your family doesn't want to listen to your diatribes any more...you feel free to come here and judge, criticize and accuse us.
Well...you aren't welcome to do that. It's a good way to get yourself banned. We've got enough on our plates right now that we don't need you popping in to add insult to injury.
Isn't there somewhere else you could donate your time?
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One more thing...I don't know the specifics of your husband's general state of health, his age or other factors that might play into this. I hope I didn't sound like I was totally dismissing his two doctors...but I guess I am dismissing the idea of giving up, or not having any hope...when it appears there may yet be things to do that could change the outlook of things!
One 3 cm. brain tumor all by itself is not, based on what I've read here and elsewhere, untreatable! Please go back to his doctors and ask questions...ask why they aren't looking to treat this tumor. And if you don't get satisfactory answers....DO get another opinion.
Some doctors give up too easily. Others fight to the bitter end. Some fall somewhere in the middle of things.
But the bottom line is this is YOUR HUBBY'S LIFE...and if he's willing to keep going in the battle...the medical profession ought to give him the opportunity, particularly based on what I'm reading here.
I mean...if it makes sense to give up with just one, still relatively smallish brain tumor...what the heck am I doing going after more than a dozen?
I'll tell you what I'm doing....I'm making the effort to extend my life because I feel good and am not gonna roll over for the cancer just yet!
There are miracles out there yet to happen...and new treatments....and other hopeful possibilities.Okay...off my little cancer soapbox
...but I sincerely hope you get some different answers and can either convince those two docs or find a NEW one who will work with you towards improving hubby's odds.Please come back and let us know how things go!?
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Wow, Hebbie...what an inspiring post. Joanie and I, I think, share a lot of the same positivity about making our way through the cancer journey...but she trumps me in a lot of ways.
I'm printing this out for my OWN rereading and think I may just take some extra copies to my onc's office for others.
What a spirit Joanie has maintained. It's not just her words in this article....I can FEEL her spirit between the lines.
She has that "Survivor Personality" down to a science.
One thing I wonder about, though....what was it in that small community on Captiva Island that produced SO many co-workers with cancer, I wonder?
A bit spooky, eh? -
So.......didja order her car yet?
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Jeez...if your hubby's docs are right...I wonder who's not telling ME something.
I have sclc that was limited at dx on 5/10/04. You can see progress of things in my bio below. As of last Friday I found out it's in my brain now. More than a dozen tumors...but the largest is only 1 cm.
I start brain radiation on Monday. I've already had PCI - prophylactic cranial irradiation...so they cannot go after what's up there now as aggressively, but both my onc and rad onc feel that the remaining radiation I can have will be enough to take care of the brain mets.
I find it rather stunning that your hubby's docs are essentially saying, "we can't do any more for him". If my onc or rad onc said that to me, I'd be out the door looking for new doctors!
Both of Alan's dr's are the most positive upbeat caring men I have ever met, both told me the same thing about Alan's prognosis (no sugar coating at this point).How can this be? I don't know, but I think I'd try to get his films and file info and get another opinion. Over 15 months of treatment I've fared very well. Yes, brain tumors are a little scarier..but I'm not folding up my tent until I know I'm out of options.
My onc told me that if I were to get more brain tumors down the line...there is still Temodar to try (which crosses the blood/brain barrier...but doesn't work for everyone. Still...worth a shot.) and then clinical trials perhaps.
Can you spell "antique" boys and girls? 
A bit spooky, eh?
Alf's cat
in GENERAL
Posted
And thank YOU, Jean, for reminding me of the cat's name....Lucky.
My memories of the show are spotty...obviously...but I'm finding that lots of people got as big a boot out of it as I did.
Sorry you lost your Lucky kitty
but glad you've got such nice, warm memories of her and her association to Alf.