Addie
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Posts posted by Addie
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Add me to the list of people sending nothing but healing thoughts your way. I am so happy Brian got some pain relief and hope you will get some much needed sleep, now that you know he'll be well tended to in the hospital.
I like his doc's sense of humor
...and hope he does indeed find enough "wiggle room" to get Brian back on his feet and able to attend the wedding.Thanks for the update, Pat. Know you have the "power of everything good at lchelp" behind you, hon...and hang in there. Let us know, when you can, how things are going.
Best thoughts and wishes coming your way.....
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Summagun, Beck...you snuck this one in just before we left on our trip west and I missed it till now!
Major congrats, dear one....I'm so glad you're still schmoozing with NEDley. Glad, but not surprised. Keep up the good work, ya hear?
Love you....
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Late to find this...but no less enthusiastic!
A great, big, rootin' tootin'
YIPPEE SKIPPEEEE!!!
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Aw.....dammitall. There is never a good time for any of this...but I SO want you and Bri to be able to attend the wedding and feel good while doing so.
Know that I hold you both gently in my heart and thoughts, hoping the CT shows what's going on and that the doc comes up with a quick fix for it.
You guys deserve so much better than this...and I really want to see pix of the both of you dancing at the wedding.
Sending all my best and hoping for some hopeful news from the scan results....
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Butterfingers. SweetTarts. Junior Mints (or Mimps, as one adorable little 4 y/old used to call them
)Let's see....Sugar Babies used to make me happy too. And Milky Ways, but not Snickers cuz they had peanuts in them. Never like to mix nuts with chocolate....I'm a purist!
Even Bazooka Bubble Gum was good.
The last thing I wanted was a d*mn bag of raisins!
I always wondered what made people think THAT was a "treat"?? 
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I'm so sorry, Millie, that you're at this stage. But I cannot help but smile at the wonderful memories you are making and how, even now, your mom continues to give her love to all of you and you, back to her.
Sending you wishes for strength and peace and continued love and memories.
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Don....
This post is wonderful. It's such an expression of your spirit and your survivorship.
You know, part of what works or doesn't work, I think, is in the BELIEVING that it will work! Of course, some good common sense things to do to take care of ourselves helps a lot. And your message is full of such things.
I never realized what you said about thin skinned fruits...but I can tell you that the one fruit I've eaten even thru chest rad, was cantaloup. I still crave it sometimes! I do eat an apple once in a while but I cut the skin off.
I'm so pleased you are doing well...and I'm going to print out your advice. I'm not saying I can or will follow it all...but so much of it is sensible and easy, that I'll beef up my efforts.
Love your comment about the fat cow...AND until our recent trip west and a loss of just 4-5 lbs, my weight has stayed stable and I work at keeping it that way!
Thanks again for your great advice! Stay well.
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How'd I miss this one? Congrats, Rich! So pleased to hear your good news...and keep it up, will ya?
Hey, Maryanne...can I get in on that deal too, at the Pub?
I'll buy the next round!! -
Hoping this new chemo is just the ticket for Mike~!! Hang in there, keep us posted and I hope his side effects are few and mild.
Sounds like his doc is staying right on top of things...which is great. Maybe the Camptosar will do the trick...eh? Here's hopin'......
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I got 18 too. Missed #4 - two colors on the Campbell's soup can, #7-the matches (hey, I used a lighter. Whaddaya want from me?
), #9...I listen to FM, #17 - what do I know from lug nuts and why AREN'T there 6 - a nice even number?, #20 - I still say some hot dog buns are in packs of 10, two more than the 8 pack of hot dogs, #21 - should know...but thought it was the Joker, and #22 - because some of the newer blinds DO have it on the right (as it did out in the house we just stayed in, in Oregon!)Not bad for a women who just had her head in the toaster, eh?
I love tests like this...and the rad onc people keep telling me it's really good to test my brain. I had trouble w/ the crossword puzzle this morning...so feel I've sort of "redeemed" myself here.
Thanks, Ann. -
I feel your pain, Cindy. My youngest is still with his first and only girlfriend. Seven years now. She is a royal pain in my tuckus (sp?) Won't even walk into a room if my hubby and I are in it, unless my son is also there. Like we are ogres.
My son is the most tolerant guy ever born, I think (obviously!) He acknowledges how high maintenance his girl is and lately, I think the "bloom is off the rose" a bit, in terms of his feelings towards the relationship. But they still live together. I've already expressed my concerns to him...so in the past year, since they moved in together...I ask after her...how's her job going, etc....and that's it.
But let me tell you, it ain't easy being quiet. I can see the handwriting all over the wall. I'm talking major graffiti here...and can only hope he's starting to get a more realistic picture too!
I mean, ask yourself how "impressed" a potential future MIL would be if the girl sits at the dinner table after a meal and WAITS for someone else to clear her dishes?
(The Princess Lives! )I raised my kids to understand that looks come and go, passion fades and fortunes come and go, too. Marry for the right reasons. Find someone with similar values....someone stable, reliable and trustworthy. Someone with character and integrity. Someone willing to pitch in a bit and make an effort with your family, too. Someone who hasn't been raised as "The Princess" in her family.
The oldest one finally got the message.
We adore his fiancee. But #2 son? Well, all I can do is hope she shoots herself in the foot...which it appears she may be doing.Does it make me a bad person to WISH for that?
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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!
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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?
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Jana...
Congratulations on your baby daughter. What a wonderful event~!!
But as soon as I try to comprehend that I am 34 years old and for the entire rest of my life I won't have her in it, and she will never meet my daughter, I just end up all confused and unable to really understand it. Does anyone know what I mean?????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!
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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.
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....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.
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I hope NED has "moved into the spare room" and intends to stay for a looooong, loooooong time!
CONGRATS~!!
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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...
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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. -
The radiation will work for a while, and my rad onc is convinced it will take care of the two remaining mets. One - the largest to begin with - was 1 cm. It is now 4 mm. but Taylor says it's about 80% reduced in volume.
The other is a r. frontal met which was 7 mm. originally and is now 2 mm.
There is no apparent brain swelling and he says I can come down now on my prednisone. Will discuss that w/ the Onc today.
I'm feeling quite good about this report. I had, you will recall, "more than a dozen" little buggers up there in the penthouse. All are now "evicted" but for the two "biggest brutes"....who are still packing and on their way out.
I....am on my way out too....to chemo. More later!
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So, what is "normal?"
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!!
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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?
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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?
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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.....
...and hope he does indeed find enough "wiggle room" to get Brian back on his feet and able to attend the wedding.
)
I always wondered what made people think THAT was a "treat"?? 
Brain Mets
in SCLC GROUP
Posted
Is your mom on an anti-seizure medicine...like Dilantin? She should be, as it might keep her from any more seizures.
You haven't given us a bio of your mom's history with cancer...so there are many questions to ask. Has she had any whole brain radiation (WBR)? If not, why not?
Is she on steroids....like Decadron? Pill form? Does she drink enough liquids daily to stay well hydrated?
I just finished WBR for multiple mets to my brain. I am also on a chemo that does cross the blood/brain barrier...and although I had multiple brain mets, all of them were pretty small. The largest being just 1 cm. Following radiation, it is now only 4 mm but reduced in 'volume' by about 80% according to my rad onc.
Oral decadron made me madder than a wet hen!
I hated the stuff but I tolerate the infusions of Decadron I get during chemo just fine! I drink upwards of a liter of water daily...to make sure I stay hydrated. Being dehydrated can make a person act weird too!
I don't know why there is nothing left to do for your mom and her brain mets...but again, I don't have all the info on what's already BEEN done for her. I would make sure your dad knows the right questions to ask if he's the one who takes her to her appointments.
And....I'd consider getting another opinion before just giving up. If her personality is changing this much...there has to be something that can be done.
FWIW, I have had whole brain radiation twice....once last year for 13 days, as "preventative treatment". Once my cancer came back, it found it's way to my brain anyway. So much for the preventative treatment.
So more recently, I had another 13 days of WBR. which pretty much took care of the dozen or more small tumors that were up there.
And while I am tired and get a little grumpy some days because of it
...neither the tumors NOR the WBR has really changed me much.
Somebody needs to talk to your mom's doctor and if he's ready to give up...then perhaps getting another opinion is necessary and pronto, before mom gets even worse.
It just makes me uncomfortable that her doc is giving up on the brain mets. Ask about Temodar or even Topotecan. Both cross the blood/brain barrier and might help reduce the brain tumors.
Best of luck to you. I'm sorry you're all having to go thru this difficult time.