Brain Mets Sisters
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always something.. ongoing. hang in there
Well, i was relieved to hear my mri results were good.. probably won't die in the next few months.
maybe i should schedule a dental appointment and actually get some new glasses.
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That is great news Apple. What a relief! Enjoy the day
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Really quick. There is a male wild turkey following around 3 females. He is in full plummage, showing off, walking sideways, as if to say, 'You like?' The females basically ignore him, but you have to give him credit for working it!! We have a ton of these turkeys on our property, I love them. Two of the females are lame but get along. I see them everyday at least once. I have named them Eileen and Peg. Get it? I feel we are kindred spirits. Can't wait for the babies. Hugs Jodi
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Apple; I hope you will share with us your results. I just know they will be positive.
Lori: Just so you know this Katie in Cincinnati.
And has anyone had Stereostatic? Depending on my MRI I am headed in this direction for at least one lesion. What can you tell me about it? Side effects? How long does it take? Does it hurt?
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Apple, Nice birthday present!! I am so very happy for you. Of course you're going to live. Plans sound good!! Have a peacefilled day. Hugs Jodi
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Tiger_Blood -you just missed them.. they're good. 0
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Tiger Blood,
I had sterostatic last week for my 10 lesions. I do not know if it worked as it is early days. But the process itself was very easy. I was in and out in 45 mins. No pre meds, just had to lay on a table, they put the masking your face and buzz away. No side effects. No pain.They gave me a dose of 4mg decadron to take for 3 days after just in case. Compared to everything we go through, it was an ok procedure. The proof is in the pudding as they say and I will know if it worked when they do an MRI in another month.0 -
Hi Bestfriend05/all,
Had an MRI and a CAT scan on 3rd May. Went on holiday the day afterwards for a couple of days at Lake Windemere.
I see my oncologist on the 15th May for my results. I am not very optimistic though as I have been having mild focal seizures ever since Gamma Knife on the 6th February (taking 2mg dex for those). About 7 days ago I started getting pain in the back of my head with headache. The pain is awful but does not last long and seems to be related to posture or if I turn my head from left or right (I upped my dex to 4mg and this seems to help). Nausea pretty bad as well when I have pain.
I am dreading 15th May. I just want to know, but sure it will be bad news
I am so worried.Lassman
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oooh Lassman.. i so hope you get good results.
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lassman, please don't worry. You are living it bad when you might not have to. Deep breaths, and picture it how you would like it. You have just as much control. Whenever I have headaches, I take a few advil, and move on. I am a head in the sand, ass in the air kind of gal. Ostrich if you will. I ignore my symptoms until I can't. I still have to do what my dr says, but i am not giving these little metastis anymore than I have to. I don't even know what Chemo I am getting. It doesn't mater to me. I am not looking it up, don't want to know the side effects ( I would get them all) and I am getting on with my life. This creepy disease is taking no more than it has to from me. I give NOTHING. Keep your chin up, and enjoy your life. Don't go to the dark side. Hugs and positive thoughts. Jodi
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lassman, so sorry u r going through so much of anxiety..! its good to know u had a holiday though..the side effects could just be a result of gamma knife or even the steroids..so pls dont let your self down so much..hoping and praying your symptoms go away and your results are positive..hope u r getting good sleep and keeping yourself busy...fingers crossed for u..hang in there..sending u much love n hugs n pls keep us posted xx
apple..so glad to hear your results were good..hugs and xx
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Well my sisters I have been lurking here for a month now and have gotten alot of inspiration from all your posts. Originally dx 2/11/09 TNBC no nodes no LVI well defined tumor did BMX and 4 doses taxotere/cytoxan hit my 3 year anniversary and thought I was in the clear oops guess not 4 tumors in the brain dx 4/3/12. Did 10 sessions of WBR that was not a fun time had horrible reaction to the steroids but since coming off have been doing better. I seriously feel that I went to bed one night and woke up in the twilight zone the next morning. I have a wonderful supportive family but I think they are in denial to what this truly means my DD will be 21 in February and I so want to be here for that milestone. I have follow up MRI on Monday to see what good the WBR did and also PET scan to see if cancer is anywhere else. I do not have a good feeling but am praying for the best.
Apple I love your pics and posts I start every day with them so very happy for you that you got good results
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Apple, pleased to hear your MRI was good.
I had a spine MRI today and found that most of the mets have responded to the radiation but there is one quite hot one which is probably what is causing my back pain (which comes and goes and is not now bad enough to need medication). So they have suggested more radiation on that spot - appointment on Monday. My hair has just started growing again and I'm wondering if I'm going to lose my quarter inch of growth... Jogging along nicely on Xeloda and part of me is reluctant to start all those visits again. Still, happy that they haven't told me to ignore this and they want actively to treat it.
I also went for my first dental check-up since diagnosis. Told my dentist (lovely, lovely man...) about the cancer and he said his wife had died of breast cancer; it was so lovely talking to him as he told me his story - it was fifteen years ago and he had twins of 7. His wife, too, had always done all her checks and mammograms. The first doctor she went to see told her there was nothing wrong and sent her home but she knew something wasn't right. The second doctor got her diagnosed correctly and sent her immediately for surgery. All the feelings we talked about were so familiar that it was really a therapy session. He said that some of their long-term friends would cross over the street to avoid talking to them and made them feel ashamed of her disease. Then they got angry and concentrated on the real friends. I'm so pleased he told me because I now know one man who can understand what my husband is experiencing and he gave me a lot of insight. You scratch the surface and everyone has sadness somewhere.
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All,
Will try not to worry. Let you know what my results are on 15 May. Hope it's good.
Thanks for the encouragment.
Lassman
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Apple, so you got the results and they were good? Tell us more, tell us more!
Barbara, hope radiation blasts the heck out of the pain and so glad other things look so goodl.
Lassman, lots and lots of hugs..
Jax, I love the twilight zone thing. I think I'll steal it...
And that sitting still and really grabbing moments, that sounds like something I should be doing.
All the good karma I can muster going out to you guys.
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WOW. Hurray for Apple, must be doing something right! Yes, you will need your eyes and teeth for awhile, take care of them.
Jodi, you are funny and wise.
Lassman..... cant you call that MO???? Why do they make you wait soooo long???? Listen, many of us have had really bad vibes about results only to find out we were worried sick for no reason. Well, we ARE sick, but you know.... maybe you're trying to prepare yourself for the worst? But honey,these drugs do work......
Banjo.... why would you lose hair? I had tons on xeloda.
Jax, sorry...... and welcome.
Tiger, Ive had multiple gammas and a linear accelerator treatment. No problems, except memory. No problems, except memory. Oh and memory.
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Sorry, to answer your questions:
My MO is "in charge" and she called all these guys. She talked them into waiting a little longer to see if halaven will work. I believe she IS concerned about rads SE's but I think it is a territorial thing too. Changing MO's is a tough thing. She is one of the best by many peoples' standards. AND I believe she will work with my team, now that I have insisted on having a team. I asked her directly about these issues and she defends her postition based on her experience. So, tomorrow we find out!
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Best of luck Kathy! I have very good thoughts your way!! There is nothing like good people working for you! Have a beautiful day. Hugs Jodi
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It IS a beautiful day.
Thanks, yall, for rooting for us. Ophthalmologist says: (drum roll)
Lesions are NOT bigger. Asked what he would do if it was his mom, wife, etc. "I would go ahead with radiation" (He's a cute teddy bear of a man)
Says he will call my MO but he tends to not get that done, so I will probe and push a little. Basically, I have to be off halaven another week before radiation, so no rush any way.
BUT NOT BIGGER, NO NEW TUMORS!
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sounds great, kathy. glad you got that team on track.
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Awesome news Kathy. Hope your MO agrees and you can get rads. No new tumors is always great!
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Lookin' good Kathy!!! Here's to good news!! Hugs Jodi
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Kathy, that's great news.
By the way, I'm not worried about losing my hair because of Xeloda - in fact, it is just starting to come back - but I'm thinking the new radiation I will be starting on my spine will cause the little bit that's there to fall out again. I might never see real hair again if this goes on!
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Banjo, my hair has been gone since early March, for the second time. The WBR is making it slow to come back. I don't care. Much more traumatizing the first time around. Now, I rarely if ever wear a hat, never a wig. Anything on my head makes my head hurt. I could never stand anything in my hair or on my head before all this. No bobby pins, hair ties, hair spray, etc. People look at me and I wonder why. If only for a second. Would rather have no hair, than be off balance and weak on one side. That I will never accept or get used to. Hope you're feeling good!! Hugs Jodi
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Had to go buy the mesh thing for the bathroom drain today. I've lost my hair so many times, you'd think I'd remember where in the bathroom we stash it each time I need it. But I always end up having to go buy another. Maybe I'm subconsciously tossing it..... I'm not much at walking well these days, but hoping upcoming PT will help with that. Really foggy thinking much of the time. At 4 mg steroids now, and get to go to 2 next week. What a difference THAT makes. Altho, still, I'm SO cranky sometimes, my temper will go from 0 to 100 over the stupidest things. Two months til scans... that sound about right?
Paula
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Kathy.. so glad you got good news and thanks for the welcome
Jodi..I hear you on the hair I worry it won't come back at all after WBR but I can't stand anything on my head except for a cotton scarf and that's just because my poor little bald head gets cold.
Paula..sorry to hear you are having problems with walking hope PT helps and I know the steroids gave me a horrible time so glad when I was weaned off all they did was make me so depressed. By the way you have my permission to steal the twilight zone analogy I think it is very fitting I am sure many of us feel that way.
Hope everyone has a fabulous weekend and a wonderful Mother's Day!!! We are taking my Mom to breakfast, then DH & DD are going to the zoo with me it was our first family date. I met my husband when my daughter was 4 years old and the first time I let him meet her we went to the zoo. So I thought it might be fun to do again. They probably aren't that excited but at least they humor me
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Not really worried about the hair - everyone says I look wonderful because I chose such a good (and comfortable wig). If the stuff ever does grow back I'll never get such a good haircut... and the time saved blowdrying - there's always a plus.
Have a good weekend, everyone, x
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We are having 50 people over tomorrow for Mother's Day. My son and grandest daughter just flew in yeaterday. My lucky husband Mark, gets to barbaque etc. Normally he visits, while I run around. Boy, have the rolls reversed. He has been working on our property for days. I must say, it looks beautiful. Hopefully our kids will help him do the finishing touches. I know my sisters will help with the meal. It is supposed to be in the high 80s tomorrow. I hope so for swimming!! I am looking so forward to the day. I wish everyone a Happy Mother's Day. I think it's fair to say, our kids are the greatest accomplishment we have made. Little brats!! Hugs Jodi
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little brats indeed!
My bro is hosting a dinner. I am bringing a spinach mushroom and bacon salad.. i mighteven buy an horsdoevre at Costco.. gulp0 -
Jodi: you know that thread that says please post words of wisdom and inspirational quotes? I'm gonna put: "What Jodi says.."
Jodi and Apple: have we had the pleasure of seeing pics of your properties, long shot, if you know what I mean?
We have a large lot and enjoy the privacy, wildness, etc, but it is not something you can show in a snapshot. Well, maybe a shot from our deck sometime. We have eastern bluebirds flitting around the neighborhood today. Beautiful weekend for moms, women, and people in general.
So glad I have you all.
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