Brain Mets Sisters
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Paula.. welcome
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K-Lo, that's great news Thanks for the welcome, guys
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I had scans done Monday, as well as a follow up appt. I should have results tomorrow (friday). As of now we're staying where we are, no chemo or radiation. Which I'm okay with. I've been doing pretty good lately. I usually wake up feeling good, sometimes like my "old" self, then after lunch I either continue to feel good or the crash starts and I have to rest. Overall, I think I'm doing good. Like you I feel like I need to complete projects and get things done. I almost feel like I'm going into nesting mode, much like I did when I was pregnant except it's not birth I'm preparing for.
Jenn
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shudder (but well said Jenn). I am in exactly the same mode. I have a mental list, and people are starting to realize i am in decline so they are calling to offer to help. discussing this list is a great way to share info and get some work out of them. What are friends and family for.
I certainly will be missing the money i was making. I will find out in a couple weeks whether to stop all treatment.
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Truly, nesting is the closest description of how some of us are acting at home. Fitz, I think, referred to cleaning out closets.... stage iv getting alll her business in order.
The thing is: I have seen a lot of women in here and a few in my "real life", who were given the worst prognosis and then offered treatments that kept them functional, active and often really glad to be alive, for years. So, my thing is, If its Hospice Time, Okay. I got that covered . But if I am going to be clunking around the house, watching great movies, playing with my dog, and enjoying birds with dh and family, i want the best QOL medicine can give me. In England, perhaps they would not let me use any more resources. But as long as BCBS lets me go to a pulmonologist who then tells me that my Med Onc is JUST WRONG- there is NO lymphangitic carcinomatosis on my scans, no way, no how - I am not gonna let brochitis take over my life! When the highly regarded retina specialist tells me, emphatically, that the lesions in my eye must be irradiated, that there is no chemo that can get to them because they are part of the brain, I'm not gonna let my MO scare me away from rads. She has this sorrowful attitude towards me when she sees me then forgets all about it for weeks and months. Meanwhile, I'm quite aware of my options and the opinions of other specialists means something to me. You know, she is tired. She sees too many patients and has 3 kids of her own and it is easier to expect the typical downslide for a stage 4 pt. BUT I'M NOT giving in to HER fatigue.
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Hi, guys, I've been soaking in the last few months by reading posts on this thread. Wow, to see how much you guys have gone through, are going through, impresses me but also scares me.
This will be at least the fifth time I've lost my hair since I was first diagnosed in 2004 with regular old Stage 2. I'm pissed!
I've already got this in my bones and my liver, wasn't that enough? I'm so mad.
I'm starting my 16 mg of decadron every day, which seems like a lot to me. So soon I'll be even madder.
I'm getting 10 WBRs for an "innumerable" number of lesions. OK, that doesn't make me mad since I know some of you have done many more. But it does make me wonder if they are doing ENOUGH.
Thanks for letting me vent. Thanks for being here.
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Paula, I'm currently asserting myself with the doctors at my facility. Do you have a neurosurgeon on your team? The docs who ordered my initial decadron dosage aimed real high. The neurosurgeon cut it way back. In my current state of mind, if I were you, I would get an appt with a neurosurgeon.
That advice and $5 will at least get you a burned coffee at Starbucks.
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Thanks, K-Lo, I'll push on that. And cloudy days just make me even more depressed. I saw the wallowing thread and I feel like that. I called the rad onc back to make sure 10 zaps is enough. I don't want to underdo it if I have to do it. Allegedly, it is according to him and my onc. Sorry, I'm being Debby Downer today. I have friends who want to do dinner and a movie at a friend's house and I don't even want to do that. Thanks for pushing me to push more.
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Bump
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o that decadron is the worst!!! i guess it's better than having your head explode.
I found i really needed a sleep aid after a couple of restless weeks.. thank goodness i had some ativan on hand (and ordered a refill which surprised my onc....) she asked "Mary, are you unusually worried?" i just looked at her.
I don't think she likes this end of life carp. I can always go to another doctor but am glad she is a well regarded palliative care onc. gosh i've known her for 4 years and 2 months now. She is Chinese and tho her vernacular is totally American and medical, sometimes her parents' manner of speech creeps in .. particularly on key words like very grave, unusually worried, quality of life and progression..
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I've been taking Ativan pretty much every night for years, just to shut my brain down from going around and around and around and around about cancer. Of course, I know I'm hooked. I also got hooked on Vicodin about 18 months ago when I was taking it for the pain of some biopsy or surgery or other. Haven't had a bit of pain for months, but take it for the hydrocodone, which perks me up. Part of me feels bad for being a "junkie", and I will skip it. Then I'm just a cranky, tired "junkie" and start over again, figuring that it's not a problem at this point
So do you guys have any things you're planning for the day?
I've got to get a good walk in. I've joined our zoo just for walking, so maybe I'll go do that. I rest a lot, but there's lots of shade and seeing the animals is pretty fun. Or maybe I"ll just walking in my boring neighborhood. Clean a bathroom. Look through some books to give me ideas for my dream bathroom, which I guess I'd better getting working on quick (and see how we'll afford it). Oh and it should be fun watching my son really mow for the first time. I wonder if I can figure out how to use the video camera on my phone.
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Dear Apple, I have pulled some other docs into my team. My MO squirms but I feel that its kind of like having only that one teacher for the entire year in 3rd grade, no matter how wonderful she is, you can benefit from other perspectives.
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Hey gals,
Just wanted to check in. Apple - you should be getting showered with cards soon. You are so loved.
Paula - I'm sorry to hear about your brain mets. Ugh, don't even know what to say except to hang in there. A walk at the zoo sounds really nice (I love animals too). I also like Kathy's advice about seeing if the decadron could be reduced.
Kathy - love your new wig! You look great.
As for me, I'm feeling incredibly lucky right now. I've only got the one little brain met, gamma knife is scheduled for Tues, hopefully will blow that sucker away. The pathology from my lumbar puncture came back negative, thank God. Docs don't feel a need to repeat it since I'm doing fine.
Have a nice weekend, gals.
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a couple of my sibs are coming over to help me finish planting including my difficult sister. wish me luck. she's been real nice but she can only handle so much interaction and her energy is misdirected... like she'll probably argue with me about where i should plant things. i know her.
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Yay, Nancy! Way to go, nancy's brain.
Apple, you are a saint (MM) and your sister may surprise you at this time of your life. I HOPE anyway.
My sister throws little tantrums when she doesnt get her way. But I dont seem to have the reactive energy towards her anymore. So it blows over.
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LOL - mysibs totally wore me out. i worked so hard.
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But, did you get the planting done, to your satisfaction? I have a sister like yours.
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nancy, that is great news.
apple, i am glad you got all that hard work done. you're better than me. because of the lymphedema, i have to really be careful about digging. my sister was down visiting from omaha and planted a few things, and my mother has planted a few others (and my husband is very much in charge of all his herbs). i don't know if i'm up to all you did today. and hey, weren't you on the "cosmetics" thread touting the coconut oil? i'm about to go get some. i'm thinking maybe it'll help me all over, and even my head when my hair falls out. do you think that would be helpful?
k-lo, i've found not much gets me reactive anymore - except when people disagree with me on politics or religion. when that sort of talk starts, i just cut it off. well, most of the time.
hope you all are having a lovely weekend.
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politics? i used to be very opinionated.. found it does not help to discuss at all.
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Hard work pays off eventually, but laziness pays off immediately. Don't over do it you guys, but do have some fun. Enjoy the day.
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An encourgaing article from a brain metastases patient, 8 years and going strong:
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Laziness pays off immediately! Ty sb
And ty bestfriend. Even our doctors seem unaware of this.0 -
My wife was diagnosed with stage 3 breast December of 2010. Febuary of 2012 we found out it went to the brain. After having WBR the lessions went down 30 to 70 percent. I have to say that im afraid as we have 3 little children. However I am always optomistic to my wife and we are both very focused. I commend all of you ladies because I am sure like my wife you choose to battle this disease and keep the best outlook you can. I belive that your outlook is half the battle. I do have one question. I would like to hear survival stories of how long your out. And if you know of other to please tell me. I only ask so that I can show my wife. To all you very fine ladies. God Bless you ALL. And remember to have positive outlook all the time. Fight the Fight
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Http://thedianerehmshow.org/shows/2012-04-16
The above show talked about how much longer people live if they have a good attitude. As in, getting out of bed having purpose. Not that we will always be able to do that....
My dear friend knew a woman, elderly a t that, who lived 10 years w brain Mets. No telling w any one individual if course. But I don't take it as a death sentence. M MO, on he other hand, needs cheering up.0 -
Bestfriend - Thanks for sharing the link to that encouraging story. It gives hope!
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I'll be thinking of all you lovely chickadees tomorrow as you begin, continue, finish, various stages of GK, WBR, or WHATEVER. It's scary, it's a pain in the ass, and just plain Blech!. Chocolate milk shakes are much better for the soul.
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Yowza! Walking at the zoo! What a great idea. We have a gorgeous stream w/ woods but anything gets old. As we all know, exercise is great for the brain.
I will have a serious dialogue with my MO. Taking a time-line and specialist reports so I wont forget what Ive been thinking about saying every minute for the last 3 days.
"My point, and I do have one, ...."
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i have a couple little red finches that nest in the Christmas wreath (my bad) still at the front door.
So yesterday i see them flying and driving off this HUGE hawk. go little birdies. the hawk looked terrified.
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Good on the finches, as we say here in Texas!
First zap done, getting steroids dosed down a little, going to start PT for balance issues, got the damn thrush again! Off to stock up on a prescrip and Biotene again. And see what other stuff they have at Target I don't really need.
All in a day's work.
Hope you all are faring well.
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Apple - good story about the finches, pretty funny.
Paula - sorry to hear about the thrush, arghh, so miserable. Glad you got your first zap out of the way.
I had gamma knife today and it went well. The frame hurt when they attached it, but just like you gals said, once it was in place, it wasn't bad. I developed a headache while I was there, so they gave me a percocet (combined with the ativan, I slept through most of the actual procedure). I was too dumb to remember to ask them to send me home with some pain meds and I've got a splitting headache. The on-call doc was kind enough to call in some vicodan, which is taking the edge off.
I have to say they took GREAT care of me. The nurses and doctors were extremely kind and helpful, talking through all the details and making sure I was comfortable. The treatment area was recently remodeled and honestly this place was like the Ritz...wood paneld hallways, soft lighting, fancy furniture and art work...by far the swankiest medical facility I've ever seen.
Final thought (sorry for rambling), but the best part was that the Rad Onc was so encouraging about my prognosis. Even with my liver and bone mets, he was so upbeat...might have been blowing smoke up my skirt, but it really lifted my spirits all the same.
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