missyk
-
Posts
713 -
Joined
-
Last visited
Content Type
Downloads
Store
Profiles
Forums
Gallery
Blogs
Events
Posts posted by missyk
-
-
Thanks to all of you who gave me places to call and things to check out on my last post.
Mom stated WBR...they're doing "double treatments" every day for 20. Her doctor's (who we've come to trust and rely on...they're in it for the long haul, too, but I'm always suspicious) told her that she should be able to look at at least another 6-9 months of QUALITY time after the WBR meaning that the "side effects" shouldn't be TOO bad for her. I guess it's wait and see what really happens...but I still can't shake that hopefull side of me, I guess. At least it feels better than being down in the dumps and I'll take all the "feeling better" that I can...as I know Mom will, too.
Will let you know what I find out as I do some more digging (cause the search always continues!) and thanks again for all your support, encouragement, and love.
Hugs and prayers for you all...
-
YAYYYYYYY!! Rich...you are GREAT! A true inspiration for the patients and families of those who first heard "stage IV" and wanted to give up!! Here's to another 4, then another, and a bunch after that!!!
-
If your gut says "go"....go. There's a reason it's telling you that, or so I've always believed.
-
I'm so sorry you're having to face this.
My opinion is that you go back to the relationship you had with your dad before the cancer. Was it ok to cry in front of him then? To express your "true" feelings? I know with my mom, I took her in my arms just the other day, both of us crying and told her how much I hate this disease, hate what it's done to her, and hate that there's nothing I can do to help...but that is a rare occurance. I am normally the level-headed one who just processes the information and "deals with it". Showing her my vulnerability let us move past the "weird" part of it. I hope it helps. I agree that the hospice team will have some great ideas and advice for you...talk to them.
Big hugs and many prayers...
-
Mom's decided to go ahead with the WBR after sitting and talking with her onc today. I, however, being a big ole pain in the butt, have some questions. I didn't go with her today (I should have, but I had to work *sighs*) and am only going on her memory of events and what was said...and her memory's not great lately.
She says that when she asked about surgical options that she was told that the doctors at the center she goes to will NOT do surgery after the patient has had radiation therapy previously. She DID remember to ask if there were places where there were doctors who would and she was told they MIGHT at Mayo. Anyone have any information on this? I'm confused by this as the SRS is supposed to do so little damage to the surrounding tissue that it would seem to me like it's not the same as doing surgery on a brain that's already been thru WBRT.
She was told that they COULD try SRS again...but that the doctors think that it wouldn't do any good as this is a recurrent met and not a "new". Again, anyone have any history with this?
I feel like I'm working against the clock on this one and I know that I'll have a ton more questions when I have time to sit down and really think some more...but these two are a good place to start.
Oh, and to let you all know...she goes on Monday for her first WBR treatment and I'm going with her this time so that I can sit and talk with her onc and be her "memory" on what he says.
Thanks everyone for any information you might be able to share with me...and even if you don't.
Hugs and many prayers for you all...
-
Andrea...
As paranoia goes, I'm right there with you...clear up to paying for tests out of pocket just to make myself feel better. I had a chest x-ray, blood work, and an ultrasound of my kidneys just recently where I had to pay for the ultrasound myself (OUCH!). Other than finding out I have gallstones (no big surprise there, I'm the only in the family that still HAS a gallbladder) I was told I checked out just fine. Within a week I was back to worrying. It's just who I am...It's who you are. **Great big Hugs, cause I can sympathize**
-
I posted just a minute ago in the updates part...just the facts. But there's so much more to this for me.
Mom's results on her MRI today showed that where she'd previously "zapped" the original brain met with SRS, there is now an approximately 3" tumor. They've told her they COULD try the SRS again...but that there's not much hope that it would do any good. They've told her that her choices are to either do wbr for three months at twice the normal rads and have more memory issues (she has no memory of my daughter spending the night with her over spring break) and more mobility issues...or do nothing. With that choice they give her 1-3 months.
I guess I've always, in the back of my mind, held out hope that Mom would be "the one" to beat this from a stage IV diagnosis...since there IS no 0% survival. And in a way, she will be, as the 13th is her one year anniversary that they said she'd probably never see. But it's hard to think of this coming to a quality/quantity discussion "all the sudden" when we'd just gotten the news not long ago that her CT showed her as stable.
Just more of a roller coaster than I'd been prepared for, I guess...and man does it suck.
-
Mom got her MRI results today...and it really wasn't what we'd hoped for. The original met to the brain that she's had "zapped" by SRS all those months ago is back...and almost tripled in size so we're looking at more of a 3" tumor now. The dr's have essentially told her the only option is three months of wbr at twice the "normal" rads....or nothing.
*sighs* Shock isn't even enough to cover it.
-
Mom...
We love you no matter what and know that each day brings you new worries and concerns and struggles. This was just another one along the way. We're behind you 100% and that will never change.
You taught us long ago that mistakes are made...learn from them and move on. This is one of those times. I love you.
-
I'm thinking of all of you and sending out prayers!! I scored a direct hit last November (the weird outbreak we had here in iowa) and it was a first for me...and something i'd rather not experience again in my life. Luckily, my friends home was spared while those around it were flattened. No injuries, though, for that we're thankful. Stay safe, everyone.
-
I have seen many a person who, while very ill and seemingly unaware of their surroundings, "wake up" and tell the ones they love that they DO love them...There is NO DOUBT he said those words to you. Treasure them.
Many prayers and warm hugs coming your way...
-
Kasey...
I'm so sorry your niece got such crappy news. I'm praying that your doc can shed a little light and hope for her...and for you. You're both in my prayers.
-
Becky...
You're going to tape it for prosperity, right? LOL
Man, she's got some stories to tell, I bet!
Glad she's ok!
-
Oh crap! With all the excitement of Mom being stable, I forgot to add that WE BROKE GROUND ON THE HOUSE TODAY!! LOL I'm such a ditz...or a BBIBB...as my best friend would say! (Blond brain in a brunette body!)
Thanks ALL for your encouragement!
-
Carleen...
I lost my first daughter when I was 5 months along to something the doctors could only atribute to a "fluke"...your pain at losing the baby/babies I feel so deeply with you. I'm so sorry.
My heart breaks for you and Keith at the news you recieved yesterday...and I know that there is little anyone can say to "make you feel better". But, there was ONE thing in all the responses that stuck out to me and something I've kept in the back of my mind for the past 11 months with mom...Everyone is terminal. In the case of our family it's said, "No one gets out alive."
When I lost Lyric the priest gave us a blessing certificate (she was stillborn so she couldn't be baptized) and wrote at the bottom...Psalm 139 I've read and reread that Psalm. "I am fearfully, wonderfully made."
Prayers for you and Keith...that you find some peace in your time of storms.
-
Not only stable...but WITHOUT treatment for the last couple months, some improvement in the left side!!! (whatever that means) We're truely celebrating STABLE!!!
And those pesky symptoms of fatigue and leg weakness...her onc agreed were most assuredly from the Valium...so out the window that goes!!! Mom said she'd rather have leg cramps then feel like pooh all the time! My step-father even jokingly asked the dr. if he could give Mom some speed now 'cause he's tired of doing the dishes!
*Big Deep Breath* and on we go!!!
Thanks all for your support and prayers...I seriously think they help so much!
Hugsssss and prayers...
-
Please see results in "GOOD NEWS"!!!!
-
Yup, we've gotten to scan time again...though this is the first time I've ventured into this area to post.
It seems odd to me to come here, for some reason. I'm so scared for her...for all of us. Yet I know that whatever shows on the CT she's scheduled for, we'll face it like we've faced all the rest.
She went and bought a new car today... the new '07 Dodge Caliber. She put it only in her name, keeping my stepfather out of it, she thought. She was hoping that, should she die, they'd not be able to hold him responsible for it. Doesn't work that way here, if it does anywhere...but he's ok with it, either way.
All I keep praying is that, opposite of what she thinks, her scans will show she's at least stable. I took the day off to go with her and my stepdad. Least I could do, I guess...and I'd like the chance to sit down with her and her onc and see exactly what's going on.
Please pray that her symptoms of late are the valium (which we can change!) and not the cancer. If it's the cancer, I'm afraid she'll just throw in the towel this time, for good.
-
Carleen...
Many, many prayers coming for great test results and renewed spirit. It takes so much for them to keep fighting...what amazing loved ones we have!!
xoxoxo
-
Jacqui...
I don't think any of us will ever forget those beginning days when terror was all that we could see most of the time. It DOES get easier.
And yes, i think we all have posted weepy, whining, scared posts...and are loved and supported when we have them. (I had one not long ago myself)
You've found a unique place where we all have been on one side of this disease or another...we know the fear...the sadness...and the joys that come along with this. Never be afraid or ashamed of how you feel...chances are someone's felt it, too.
I've learned, after it was pounded into my head from those on here, that statistics mean NOTHING! Mom was told that she had 3 months...maybe a year if they about killed her with treatment. She's 10 months in and still kickin...and without getting too sick from treatment.
Warm hugs and prayers...
-
Oh, i forgot about that part, Lori! Thanks for reminding me. Mom DIDN'T have a frame, she had this cool mesh stuff that conformed to the shape of her face...she even got to bring it home to show the grandkids who thought it was really neat to see. So, again, maybe it was cyberknife. They just called it stereotactic radiosurgery. Hope all goes well!
-
From what i understand Gamma Knife is a form (Brand?) of stereotactic radiosurgery.
Mom had SRS on two lesions in the brain, one 1 inch, one 1 mm...both were taken care of with no side effects. We thought it was pretty cool, actually, the whole process and the technology!
-
Just chiming in with another opinion that you should look into stereotactic radiosurgery (SRS, cyberknife, ect) instead of whole brain radiation...Mom's tumors were "zapped" by it and all she said was she could feel "a strange feeling" where the tumor was for a few days.
Best wishes and hugssss...
-
Thank you all for your kind words, your understanding, and your advice. What would i do without you all to advise me through this?? I don't even want to imagine!
My step-father called today and brought me to tears with him saying the simple words, "I've accepted what's going to happen."
He's been the one, since her diagnosis, that's said "she's too much of a bit*h to die" *giggles* so for him to say that he's accepted that things aren't going to work out like we'd hoped just crushes me. Yet, tomorrow's another day and every day after that...and each is a blessing, as you've all reminded me, yet again. I really DO think we're starting on the downhill slide...but who knows how long that will take with this danged disease. I pray that she makes that year mark that the doctor's said at first she'd never see...it would be like stickin it to them just ONE more time! LOL
Thanks again, everyone...i've come to love you all and pray daily (and nightly!) for everyone...
My opinion is that you go back to the relationship you had with your dad before the cancer. Was it ok to cry in front of him then? To express your "true" feelings? 
In Az... time for hospice!
in NSCLC GROUP
Posted
Cindy...
May you find peace in your journey. This disease DOES suck! It's taken from all of us (both patient and family) that safe place that we always thought would be there. I'm so sorry that you and your DH have lost a close person.
Now is just a time of emotional rawness and I'm sure he understands (and in a way appreciates) the tears that were shed becaue of it all.
You and your family are in my prayers...sometimes I just wish there were so much more I could do.
Hugs and many prayers for you and yours right now...