Brain Mets Sisters
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Lori,
The brain MRI and the Pet sound very positive. That is great news that the brain lesion has shrunk and the TCH is also working. Hopefully the headache is related to chemo, stress or something like that. Try not to imagine worse case scenarios. I had really horrible headaches last month and nothing would make them better. That is how I was diagnosed with brain mets but neuro said my mets had nothing to do with the headaches. My headaches went away on their own the day I had my brain MRI. I hope you feel better and the headaches go away.0 -
i always get a headache before sex time.. go figure.. really, but i don't tell anyone.
Lori.. i seriously hope it is just headaches.
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Hope they can sort this for you, Lori; the problem with headaches is that the stress and frustration they induce adds to the pain and you get a vicious circle. Hope things ease soon for you.
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Lori.. sorry to have so blithely addressed your issue. there are things I notice within my own head.. zips going back and forth between the ears and may signs of future seizure activity. i hope not. I have been having more unique and frequent headaches. very short. and very scary. i hope you'll be fine.
I am trying to work at creating a blog for my husband's company. egads the learning curve is steep but I am finally beginning to get interested in it.. so it's becoming fun.
Apparently there is tumor growth/activity in my remaining boob.. so I'll have a biopsy at worst, maybe a mastectomy. My onc. wanted to see me but i suggested we wait till the results of the MRI come in. she'll probably call me today. I never have a problem with her hording information. So, if i am healthy enough i'll have to do the drain thing, We'll see. I am ridiculously nauseous.
I'm thinking i better get cracking on that blog.
I'll take a pic of the decoration i made. During my recent card shower, the most beautiful flower arrangement appeared. I washed out the cube (whit glass( and filled it with my collection of polished rock that i polished myself with a tumbler.. scouring everywhere, shops, fields, garage sales for gorgeous rocks. i even did a batch of opals.
And as far as recipes; i always make a ton of hummus. i freeze it in batches and it keeps indefinitely. i then serve it with kifta? or lamb or lamb/beef meatball things that i grill. with this great bread, tabouli and tsatsiki sauce. I pull out a carton of hummus and make tabouli which i think is my favorite food ever.. I buy #2 grade bulgur wheat. not too fine, not too coarse and soak it in an equal weight of water.
2 cups bulgur and 2 cups water. if there is too much water pour it off... not enough, add more. the grains should be chewy yet soft, and dry enough to absorb the liquid from the vegetables.. you can always add more liquid later.
I add a chopped onion, 2 or 3 chopped tomatoes, 2 cups chopped parsley, a cup of chopped mint..
i then take the juice of 2 lemons and maybe a cup of olive oil.. and then salt.
it shouldn't taste too lemony.. you want to be able to eat a lot of it without feeling like it is too much of a salad.. I really like sour things, but too much lemon is not so good for tabouli.
i grow my own mint but it is very cheap at middle eastern groceries. In fact they have huge bags of greens that you cook in soups, mix with eggs..use as spices that are excellent.This is one of my favorite songs ever.. the tabouli song
http://www.youtube.com/watch?v=1FaNzrtu0KM
I am really good friends with the guys that own this arabic store
(a father and two sons. they also own the cafe next door. The sons NEVER smile, but that father does). He has the cushy job of manning the cash register at the store. . They have a bakery and make all sorts of pita type breads.. oh my word. At the owner's urging i have tried all sorts of unique foods. I take my friends there.. they spend about 60 bucks and he gives us samples or makes us a sandwich. His own wife died of breast cancer. He never says anything, never has even touched my arm.. but i feel the love and sadness.0 -
Thanks, Apple, will try your recipe - I didn't realise you could freeze hummus... Since I got my taste back I can't stop thinking food (after months of eating nothing much other than Chinese noodles in broth - instant kind - and cheese and cucumber). My lunch today was dark, nutty German bread with Serrano ham and fresh home-made coleslaw; I'm so pleased that I also have the energy to cook as I have so missed cooking.
Sympathy over the drain thing, ooh, that was nasty (and bloody painful, I found). If you have the mast. let's hope that won't be so bad this time.
Happy birthday for the 9th, wasn't it? And, of course, will be thinking of you and hoping for the best from your scan.
Barbara
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thanks banjo.
also a pic of my dining room - i just adore my new house which was a hopeless mass of shambles when we bought it.. so much so that it sat on the market for 8 years. We bought it the day they dropped the price by 40,000. My husband is a builder and remodeler and if there ever was a place for all his hoarded junk this is it. He built an outbuilding that could house several cranes..as big as a HUGE barn. My bro gave me that quilt that was left in the attic of the house he bought and I bought the bronze horse at the top of the shelves for ONE DOLLAR at a garage sale. one dollar. i really should have gone back and given that woman some more money.. she knew i had breast cancer.
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I love your stories!
My brain mets sisters sound like me. I walk with a walker from chair to chair. I am very uncomfortable walking alone because I am so wobbly. I become easily confused and forget a lot. I blurt out or say things that make no sense. The good news is that I catch it right away and know what I am saying is wrong. I've become a mess, more so in the last few months. And sleep..................its so frustrating. I too have been up since 4a, in all honesty 4:40am. That makes for a sleepy day.
Anyway, loved your story Apple thank you for sharingl
Jenn3
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Oh Jenn, isn't this something? I just had chemo, and my walking is atrocious. I can't use a cane or a walker, because they ultimately would be weapons. I walk like a pinball instead, grabbing walls, tables etc when I get extra wobbly. I will tell you this, falling would never be an option. I will adjust to assistive devices first. Sorry about the insomnia. That sucks. Nothing like sleep deprivation to make everything worse and more magnified. As far as blurting things out, that is my new normal too. My voice can be way too loud and sometimes I laugh like a damn hyena. WTH? As with all this new stuff, I take one day at a time. That is all I can stand. Take care and please know I am keeping you in my good thoughts.
Apple, you weave such good stories. I am always entertained. I hope you are having a fabulous day. I hope the MRI was good news! Hugs Jodi
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Jodi
You are funny, but hit the nail on the head. As miserable as it is, it is funny at times and all I can do is laugh.
(((hugs))) to you - Jenn
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So my darling, bratty baby girl, has asked me to write her a letter to go into a time capsule. This is part of her senior year project. She will read it in 10 years. Should be quite an endeavor. What would you write? Mind you, I am such a cry baby these days.... It has to be written by the 16th of May. Help!!!! Hugs Jodi
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Thanks for the responses to my headache question. Saw my onc today, and he thinks the headaches are radiation related even this far out....trying a steroid taper. Hope he is right. If not I will find out when I die rather quickly since LC mets untreated have a prognosis of 4-6 weeks. lol. Ok, not funny.
Apple, great stories!
Jodi, I have written tons of letters and cards to my kids and sob through them all. Just pour your heart at to her! Once you get going it will flow. Good luck!
Hugs to all,
Lori
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Ok Lori. You have me stumped. What are LC mets?
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Sorry, Jodi. I posted about it yesterday. I was being lazy!
LC mets= leptomeningeal carcinomatosis
Cancer mets in the spinal fluid that surrounds the brain and spinal cord. Relatively rare, usually seen in late stage cancer. Poor prognosis. Basically yucky.0 -
Lori, I do not think that is what's causing the headaches. I think it's the residuals from the creepy radiation. I still get some whoppers. Less frequent but holy helicopters!! I am really bad at abbreviations, memory etc., so sorry I missed that. Picture the future the way you would like it. It is a job, but it works!! Tight hugs to you. Jodi
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Question... My sister is one month out from whole brain raidiation treatment. She had multiple lesions (4) 2.8 cm - (10-15) 4.4 mm... She has been working ever since.. On her feet 40 hours. She has taken some bad falls, has back pain, the typical water retention, hump back, and is now having ringing in the ears. Her MRI is next week. She also has cancer all over her breasts and is scheduled for a double masectomy and reconstruction (her choice) it may change after MRI. Her doctor's are taking it step by step and have given her no hint that she will not be here 10 years from now. Does that seem strange to anyone. I am a realist. And trying to hold the rest of my family, our parents together. Is the ringing in the ear a WBRT side effect? Is the complete numbness in her leg and falling a WBRT side effect? Or are these signs the cancer is elsewhere and treatment did not work?
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Hi Golden Girl, I think your sister's falls and ringing in her ears are definitely WBR related. It is still early in her recovery from that hellacious treatment. I am two months out, and I still blame everything on the radiation. It is amazing to me, that she is still working, let alone 40 hours on her feet. I was stuck for 2 months in my chair, waiting for the side effects to ease. The leg numbness is my life right now. I am beyond careful, when it comes to falling. I can only imagine the nightmare of really hurting myself. Broken bones? OY. I am waiting for my brain scan to see what the WBR has accomplished. I am thinking cancer free!! Even in my liver and my spleen!! LOL A girl can dream. I wish your sister the best in all this. Let your family as well as your dear parents know, one day at a time. No going into the future. We tend to horriblize when we do. Stay in today. It is all we have. Everyone!! Hugs Jodi
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Thanks Jodi, and good luck on your MRI.
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Apple,
Good luck on your MRI today and wishing you a very happy birthday and many more to come0 -
Thanks Jodi, and good luck on your MRI.
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Happy New Year Apple!! May all your birthday wishes coe true!! Eat lots of cake and ice cream!! Love, Jodi
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hey u guys, anyone heard from lassman , i am sure she had a scan early may too..?
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Bestfriend and Goldengirl, just a reminder that there is a special thread for Non-Stage 4 folks where the support is designed to help yall. Just look at the top of the Stage 4 page. We, afterall, cannot diagnose anyone else's condition. We barely know whats going on in our little heads. My opinion, anyway.
In friendship, Kathy
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If I haven't offended everyone.... I'm really anxious and depressed this week. In the last episode, my MO put the brakes on radiation to my eyes because she wanted to see if Halaven would shrink the tumors. This in spite of neurosurgeon, ophthalmologist and radiation oncologist recommending radiation 'to save the vision". So we go back to the ophthalmologist friday and get the big answer. Of course, my eyes are acting kooky. There is a huge element of mental influence with me. Psychosomatic you might say.
thanks
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gosh Kathy.. that's scary enough.. i get my mri results in an hour or two..
ick
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Hoping, crossing, and feeling confidence for your results, MM.
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Kathy i am sorry to hear about your distress and hope n pray everythin turns out okay, the other day i noticed i think on stage 4 hormonal thread a lady having radiation for eye mets..thought i would just mention it to u if u would like to get in touch with her might help to exchange notes..hope your results are positive, prayin for u..
As for your previous post my mum is stage 4 with brain mets since sept 2011, i am not very expressive and i am sorry if that reflects in my previous posts..not looking for a diagnosis just support xx
Apple praying for u like everyone else here xx0 -
My gosh, something ELSE to wait and worry on. Hope they come to concensus really fast.
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Happy birthday, Apple!
Kathy, you would think the three doctors could outweigh the opposite opinion just by numbers - what a nuisance to have them disagreeing. Hope you are fully informed of their reasons for their opinions and push for what you want after considering them. Good luck.
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Kathy,
((hugs)). You are going through a lot. Did you get a second opinion on your MO recommendation? If 3 doctors are pushing in one direction......
Protecting vision is something imp for QOL but you know that. Why can't the radition and Halaven coexist? I hope you get clarity this Friday and can get your eye radiated or the decision the four doctors and you agree on.
This brain met journey sucks.0 -
Stress, scanxiety and looking to far into the future, seems like the common denominator here. Rightfully so. However, like our ativan and other sedatives, we need as many tools as possible to keep our awesome brains, at ease. My dog groomer has given me what I think is brillant advice. Stay still, and in the moment if you can. At first i looked at her like she was smoking crack. Then I tried it, an lo and behold it helps. I picture my surroundings to the very last detail, always in the present. I end up taking some very needed cleansing breaths when I am there. It doesn't change anything, but it makes me feel better and more calm. I hope his will help for all of you. I think about you sisters all the time, and it is always positive and hopeful. I wish you could feel it. Have a beautiful day. Hugs Jodi
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