Brain Mets Sisters
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me?
I'm soon to be 56 (born in '56). the mother of 3 awesome kids, Owen, 17, Gene 14, and Klara 12... they have unique personalities, are polite, loving, independent and very fun to be around. The middle kid is a scholastic challenge but is always working hard on something... very unusual and interesting.
I was a chef, was an artist.. pretty diverse.. i just like to do all sorts of things and have always freelanced my music and art skills, supplementing my income with restaurant work.
Write now i make money as musician.. I play the organ on weekends and for funerals. It is fun and lucrative hourly.. i adore it. I used to accompany a rather prestigious choir/ ensemble which was challenging and very fun, but it was volunteer and I spent a huge amount of time in practice and organizing my music and how every thing would go. I hired my 'Director' and she turned out to be the uber manager of the century.. an awesome 6'1" former military intelligence member with a doctorate and now a good friend..
Now I 'run' a section of the worshipping county about 30 miles NW of my home... 3 small country churches.. I organize the music and play 2 of the 3 churches each weekend. Logistically it is super simple to coordinate thanks to the wonders of the internet. I drive.. i play.. i go home. i love it.. I also play at a older Italian church in downtown Kansas City on Saturdays. lots of fun.
I am the office of my husband's remodeling company. I fired myself from bookkeeppiinngg.. (i am horrible with numbers really) but pretty much do everything else.. not hard after all these years. I've set up proposal templates, contracts (with lawyers), marketing, correspondence... kind of a lot of work.
now that i have brain mets i am going to work on weaning myself from my company job.. perhaps mr. apple's sister (who is wonderful, but i don't get along with ) will take over. She'll be perfect.
I am a very happy person.. I think that has been my greatest blessing, that i was born smiling. - I am the oldest of nine kids and help support my brain damaged bro.. who is a very high functioning human.. just super odd. Mr. apple is the youngest of 9 kids and we have huge family parties. We've both recently lost our parents.
We moved a couple years ago to this awesome property right in the middle of the burbs.. 2.4 acres with a huge new outbuilding.. a huge rebuilt house. I absolutely adore it. it still needs a ton of work.. The inside looks awesome because we are bold decorators that use lots of color and we have a lot of artwork including my own and my children.
I hope you liked this report about me.
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Apple,
I love the names of your children and would like to see your artwork and decor (I am a great fan of Mondrian and love his use of primary colours although haven't had the guts to decorate that way!). So interesting to hear more about you.
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a few pics banjo..
this is me and my kiddies in 2000. My husband's genes predominate altho son #2 looks and is quite a bit like me. .. The boys are named after historical names in his family.. Klara: we couldn't think of a name for her, so in order to leave the hospital.. we chose Klara Marie and were going to maybe change it, but didn't. Klara is extraordinarily beautifull and thankfully doesn't exploit it.
this is in 93.. I met my husband and went out on one rather unimpressive date.. (my bro who worked for Kim my husband, had been begging us to date for years by then. about 4 - so we did agree to go out - but only once. 9 years later we bumped into each other and started talking on the phone about Ross Perot. .. I was having an artshow.. he made the frames, and then we got married less than 6 months later. . i was so pretty back then. big sigh.
my own little corner above ^
one pic of son #2 to make you weep...
me and the fam in San Diego.. a couple weeks ago with wig and steroid face...
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Oh, apple, these are such wonderful pictures! What do you mean you were so pretty back then? You're still beautiful, and so is your family! You are so talented, too. My Mom is a singer and artist. Of course, I inherited none of her talent.
Peggy
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Apple, you are very beautiful inside and out and your kids and hubby are so handsome too. I love your artwork and have had the pleasure of listening to you play. You are one talented women! hope you are doing well. Dawn
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Apple,
Thanks for sharing so much; I did get a lump in my throat when I saw your kids - they are gorgeous. My youngest daughter plays flute and my eldest plays piano - we have an upright piano here and she has nothing in England but she would adore your grand piano and your special corner. You are going to get loads of comments now about you still looking beautiful - and they are right.... By the way, do you paint in oils, acrylic or what? There's a touch of Klimt about the texture in a couple of them. Loved the photos.
Barbara
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Brain mets really is a daunting diagnosis.. no? I am not too bothered by it.. i figure no matter what you have it's going to be rather bad at the end. My BIL died a horrid death from pancreatic cancer very suddenly.. i think i will enjoy fading out at the end in a cloud of painkillers.
It is nice to share about who we really are and NOT be defined by this awful thing we have. so the following info about my job is all for me but I really hope others chime in with personal and fun info which I can't wait to read. Chainsaws - I've admired you for years and you make me really hopeful.
I've been working as an unpaid musician for about a decade.. donating to my church but also getting a totally free education from an incredibly gifted woman. She is 6 feet tall, half and half Norwegian/German genetic stock, just like my husband's family. She and her husband were both army officers and very smart. She was in security and intelligence. They are sooooo tall compared to me and if we weren't both so hardworking we would be friends that hang out. I really miss being around her..
SO - more noncancer sharing please.. i just love reading about different ways and have added you all brainmetsisters to my list of 'prayer-recipients'.
anyhoo (that's what they say in Vermont)... just a bit more about my job. (from my recorded stuff for the kiddie files which i wrote this morning.... things they can read later on down the timeline).
I have this new lucrative Sunday job. I went from an unpaid volunteer accompanist for my old choir ensemble to a country church organ position.
I learned a ton from my old job. My director that i hired, paid for her doctorate and i learned from her for about 10 years. Simple things like turning pages, being prepared, supporting and leading choirs, cantors and a congregation with the poor excuses for written song literature that they give you, all have to be learned. .. it is not rocket science.. I am also taking organ lessons from this incredible guy just because I can.. on a super duper electric organ. The older pipe organs are very temperamental, usually broken and out of tune.. it takes a fair amount of experimentation to get them to sound good. ( I only play one, once every other week or so).
I drive 35 miles to a little trio of towns with 3 darling old fashioned, steepled churches, a very elder priest and a young very very holy priest who I really get along with well. " Father.. I am just not the holy type.. that is why YOU are a priest and I am a musician". I play at two of the 3 churches every week.
it is really fun, and the drive is absolutely gorgeous with the last ten miles being a couple stretches of country road. I'll have to take some pictures. Early buildings in the area were sometimes built of cut limestone.. the old churches and houses are more than picturesque with interesting architecture and darling steeples. . The area is fairly wealthy and for farmland... it is pretty well manicured with the occasional huge mansion sprinkling the landscape of rolling hills, gentle forests and fields of soybean, wheat and what i hope are sunflowers.. ("Sunflower Acres")
I've given up on my own garden basically but see signs for country produce stands.
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Thanku apple for sharing your lovely pics, u have a very beautiful family..
Wishing everyone here peace, happiness and good health..
much love xx
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You are blessed with a beautiful family. I really enjoyed the pics and the background info. Thanks for sharing!
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Love all the fun stories and pics! The photos are great!!
Sorry to interrupt, but I have a brain question. I had WBR, finished end of Jan, and then I had SRS three weeks ago. I have had two all day episodes of dizziness.....first was three weeks ago and second episode started Saturday night and has not stopped.
Thoughts? Similar experiences? If I sit and don't move my head I'm ok otherwise it is awful. I know a million things can cause dizziness, but I'm sure this is related to all this brain crap.
Thank you, ladies!!!!
Lori0 -
i'd certainly call..perhaps it is just dizziness.. perhaps you should 'get on it'.
good luck
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Apple, I more than enjoyed your life and family. I feel like I now know you, and not just our common BS disease. Your pics are fabulous. You have an adorable family. Lucky. I will post some of my story after I get going with my day. Thank you so much. Hugs. Jodi
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On the personal side, we went to Dauphin Island this past weekend. Drove 5 hours Saturday, back Sunday. My DH doesn't seem to know how to ask for a 3 day weekend. But it was worth it. Gorgeous weather, blue skies with tiny bright white clouds. We saw birds... Willet was the newest, Osprey the biggest and most stunning... and let our doggie bite the water. Apparently, he is too lean to swim; he wont go in. There were some beautiful dogs diving into the surf to catch sticks and just swim for pleasure. I love that.
I dont know how to insert photos.... Do you want to see the Gamma head frame?
Kathy
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K-Lo
if you are on facebook .. you can simply copy and paste photos.. you open the photo so it is full sized then rightclick copy.. and then paste into the reply box of BCO easy peasy.i don;t know why BCO and facebook are supercompatible but they are.
otherwise you'll have to wait till tomorrow and have to have your photos posted on line on a site like photobucket of Flicker... ... to start. not that hard. I'm just going to have you wait the anticipation will be fun.. time for bed.
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Lorieg -- I finished WBR end of October, then chemo directly to the brain. Tests show I'm clear in the brain but the DIZZINESS oh, my. So much so that my onc ran anothe rbrain MRI to make sure there was nothing going on. It's only when I stand from a sitting position. So I am back on steroids every day -- those also make you dizzy. All I can say is the WBR along can have dizzy effects lasting for months, then think of all the other foreign substances that go in our bodies, the daily drugs -- no wonder we're spinning a bit! But as I say, I'll take this and clear brain scans any day. And just for it to clear up. That's what we do, right? Wait to feel better for a while?
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So great hearing more of who we are.!
I will post soon to share me.I am 10 days past being done
From 25 treatments.The fatigue feels like my eyelids have lead attached and heavy to open.I kind of feel I have hit a wall and still can't sleep for more than2 hrs at a time.Yesterday was my first day of 1 mg of dex....I had the most emotional day with my boys,made me so sad and like a failure mom,,,I hope it was the drop in steroids gave this reaction or it was just time for a very sad bad day.I have high dose Vit C in an IV today I feel better after that.
@mauimom how are you doing? You are close to being done. Make Stong
Aloha to all0 -
Don't be so hard on yourself, you have been through a lot. I had a very hard time with the steroids. I have been dealing with cancer for almost 11 years and have been Stage IV the last 3 years. I finished WBR in October and had SRS about a month ago. Right now I'm on a 6 week chemo (Gemzar) break. My son was 7 when I was first dx and will be 18 in 2 months. His dad divorced me the first time I had cancer (after a 21 yr. marriage). It was hard. Sometimes I feel I was not the best mom but I know that I did the best I could under the circumstances. Every once in awhile I feel overwhelmed and will kind of lose it and then I feel bad. I apologize and he always tells me he understands. I do believe that I am a good mom and really did do the best I could. I think my son also knows that. Hang in there!
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Well I finished my 14 WBR treatment a week ago and I am feeling the side effects.. I am tired, my taste buds are horrible, my legs feel wobbly, my hips hurts and I toss and turn all night.
HOWEVER THANK GOD for this thread!!! BASED on this thread-- this is all normal side effects of WBR -- Thank goodness cause I was about to go crazy!!!
Per my doctors orders -- I am weaning off the steroids and today is my last day on the steroids.. I did figure out that if I took the steroids early morning and before 5pm -- I slept better.
My hip issues are actually caused by the steroids my doctor told me -- so he gave me some exercise to do at my desk. We are moving to the next round of chemo for the few leftover issues/spots on my subclavicle.
I need a restaging PET CT scan in 2 weeks for restaging and an MRI in 7 weeks to see whats happening up there in my head!!
Peace and blessings to all!!!
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OK. Where do I start? I am 50 years old until April 1st. Married to the best person I know, for 27 blissful years. 4 adorable chidren. Nicholas 30, Chase 24, Michaela 21, and Alyssa 18. They are my pride love and joy. Nicholas was the baby boy I always wanted until puberty! He definitely gave us a run for our money. Lo and behold, he did grow up, and he is one of the nicest people I know. He can't keep a secret to save his soul, but he's beautiful inside and out. He was my first love, and he will always be my favorite. He also has my grandest daughter Baylee, 9 1/2, who I never knew I could adore so much. She acts just like me. Super dramatic, a bit snotty and really bossy!
Chase has always had the sun at his back. Delightful. He really has never given us any problem. He is kind, empathetic interested and interesting. Right now he is almost done with paramedic school. His goal is to be a firefighter/paramedic like his dad. He is 6' 5 and totally ripped. He is a swimmer (open water lifeguard.) He also lives to workout. His sense of humor is great as is his ability to learn something new. In the last 6 months, he has become my husband's 'mini me'. You can see why he is my very favorite.
Michaela is probably most like me. She not only looks like me, she does a lot like me. She is very easy come, easy go. She is a chameleon when it comes to fitting in. She is really pretty and she's enjoying 'her turn'. We refer to her as our 'can do' kid. I can still see her at 4 or 5 years old, making french toast, and fruit salad. She could repel, before she could walk. She has never known a stranger and she adores her family. How could she not be my favorite? I just love her even if I had to drag her by her ponytail to get het high school diploma!!
Alyssa is our baby. She is in her Senior year at high school. We had to have 4 to get one with curly hair and who gets straight As without ever being told to pick up a pencil and do her homework. She works at a children gym about 25 hours a week, has an incredible social life, bakes a few times a week, and still manages to get straight As in all honors classes. Like her sister, she is gorgeous inside and out. She is a lot like me in that she likes her way, and a lot like her dad, in that she takes care of business. She has a real knack with liitle kids, and animals. Teachers, parents, coaches etc all love her. To tell you how spoiled she is, she got her driver's license at 10:00am when she was 16 years old. She came home, showered, shapooed and shined, and took my husband's brand new car for the weekend. She now drives a Lexus because she is so worthy!! She is definitely our baby and she has always been me favorite.
I have been a stay at home mom for 30 years and I wouldn't change a thing. If my kids ever need counseling, they can narrow their problems down to me. No daycare, family bed and I breastfed until they were a little past 2. We have lived in the same house their entire lives. I have loved and worshipped their father since I met him. We ate/eat at the dinner table every night. Our lives are ridiculously predictable. LIke I said, Mark (husband) has been a firefighter for 33 years, retired right before my diagnosis. (Fortuitous) So basically he was gone 11 days a month. Maybe that's our secret!! I will share more in a bit. Hugs
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jodi... loved your bio .. your kids must be awesome and you are so fortunate to adore your husband. everyone should be so lucky.
they told me WBR side effects may last a while.. my forehead and the nape of my neck are both rather red and my ear canals hurt.. they aren't red , but then, i can't see them. thank goodness for pain meds. fatigue or course.. othewise, a piece of cake. I am going to have the DH look in my ears. the hearing is a bit muffled but they said it was to be expected. I think my mets are in the temporal lobe.. 6 small ones that they can see.. hopefully radiation shrunk them right up.
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Jodi,
Love all the 'favourites'. I feel the same about my two. I was also a stay-at-home Mum (although I did do the university work part-time at home and a fortnightly seminar in Düsseldorf) and I can honestly say that I loved it - although I have no criticism of working mothers, I do believe that my girls got a great start in life because I was home with them and we had so much fun together. I am very grateful to my husband for making this financially possible as it is the happiest achievement of my life.
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My oldest son, Nicholas, his girfriend Marki and my Grandest Daughter Baylee got in around midnight, last night. They are all a sight for sore eyes. Mark, Chase and Nicholas are all at the gym. Us girls are in our jammies, watching The Girl With The Dragon Tattoo and eating cake and ice cream. Marki and I are making pot roast in a bit. I fee a little stronger but my balance is out of control. I have to fight the urge to cry over all of this. I have never been a victim, but sometimes...
banjobanjo, I have always been grateful to Mark. I think we have both gotten what we wanted, when it came to what our family would look like. He loved/loves coming home to the family all in their places!! Headaches ebbing, and the nausea is all but gone. Not looking forward to the scanxiety and starting up chemo again but I am trying to picture it the way I want it to be. Head in the sand, ass in the air. Hugs.
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Aloha ladies! I've loved reading about your real lives! Thank you so much for sharing. Eight more wbr left - the dizziness is starting to wear on me but I'm hanging in there - with a few more ' mean mommy' moments though unfortunately. Oh well...but, here goes - I'm mommy to three beautiful girls, ages 6, 4, and now 2, an attorney, and wife to an attorney. We're lucky to live on Maui, and even luckier to live nearby to my entire family. I can't even imagine living somewhere cold again - went to college in new Hampshire and nearly froze to death, moved to tucson for law school, and made my way home. I guess I should say I'm 37...not working now, on extended leave, just trying to figure out what to do next.
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Hey, brainiacs. Just a positive note to keep with up your uplifting spirits. We had a little music party tonight and it felt greatvto be alive!
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brainiacs... perfect
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I am getting tired of the fatigue. There is only so much sitting, and watching TV I can stand. My childhood girlfriend is coming over to watch Thelma And Louise. I do love that movie. I go to bed each night, thinking I am going to wake up with more (some) energy. Dammit anyway.
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Jodi, know exactly what you mean. My favourite sofa seat has begun to show signs of wear and sinking because that's where I have sat for months during the day. As we have only German television, I have watched old dvds, new dvds and masses of Youtube, while embroidering or quilting. I would love to be pottering about with my old energy (or even a third of it) and ideas for this and that. Sometimes life has seemed to come to a standstill. Thank goodness my husband works from home most of the time, I can now go to quilting group meetings even if I'm exhausted afterwards, and a couple of good friends pop in for an hour each week - enough for stimulation but not enough to tire. I don't know whether we are impatient about our energy levels or unrealistic - maybe this is the new normal and I should rethink my life around it. I have arranged to meet someone in town for a coffee after Easter - big deal!
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i admit my SEs are not too noticeable but i am noticing them as time goes on. I've been fatigued for about a year now.. nothing new there.
my hearing is a bit muffled, my ear canals hurt, My forehead and the nape of my neck are fairly burned.. very red and tan, i can hear my neck creaking, my brain seems simple.. i putter and putter, organizing drawers, jewelry, makeup. i do the housework but i am getting behind. I can hire these woman to come monthly (that's all i need for now) but I am just going to pay my awesome friend.. she is one big strong woman and her house is absolutely spotless. We live very differently. She makes her kids clean up and her bathrooms are pristine and gorgeous.. even the toilet paper is pretty. we buy the cheapest.
We support these nuns (Little Sisters) and brothers (Little Brothers), or my husband does.. he builds things for them and finds free raw materials. They are from various countries and are not allowed to earn money.. they provide free hospice for the destitute among other things.. They are simple, joyful and dress in blue/grey One of the brothers, Maurice from Austria, came in for tea, sat down at my piano and started knocking out some of Rachmaninoff's 2nd piano concerto... then Lizst, then Chopin. He is an absolutely fantastic musician, obviously trained to be a classical performer. when the brothers left our house, the four of them linked hands and sang a very simple bless this house song.
Bless this house, bless this house, bless this special house
So i am hosting a recital fundraiser. He'll play and my friends will pay. (i have a secret friend who'll donate a big hunk of money which we'll sneak in.. They'll be able to put pews in their little church. They can accept money under some circumstances.
I have the best venue, seating for 40 and know lots of religious folk (I've been working for Catholics for 4 decades now) and classical musicians. 3 of my students will perform rather short pieces to give him a break. Maybe my old director will sing one of her Bach arias.
Anyway.. i have to get my house REALLY clean.. It's gorgeous, just grungy.
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Mmmm, Apple,
Someone playing Chopin in the house - heaven. Looking forward to my eldest coming home on Wednesday and hoping she'll open up the piano and play my favourites. Your concert sounds a wonderful idea, good luck with it.
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I cannot play Chopin on the piano but I do watch the movie Impromptu frequently. You get the music plus a young, dreamy Hugh Grant and Judy Davis, great light, entertainment.
I will confess my somewhat guilty secret again. When the day is right, I take some Ritalin and lortab and do a moderate version of my old workout at the Y. 20 mins on treadmill (more if revved up, but not so much that "tomorrow" is horrible). And a slow, moderate, weightlifting session. Minimal weight, nice slow reps. Long stretching session to follow.
The thing is, this makes me almost too energetic for a few days. I have to watch it or will collapse in 3 days. Well, collapse is an exaggeration.... but, you get my meaning; moderate for a good pay-off. The Supportive Care specialist says this is very appropriate; using Ritalin to energize my body in order to get muscle tone. She said muscle atrophy is a nasty impact of cancer and treatment and does not bode well for survival.
My two cents.
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