Brain Mets Sisters
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Hi. I would like to join this group. Just got brain met dx fri so I am not sure what the tx plan wil be. I
Have two buggers 6mm and 1cm and many small suspicious ones. I was dx in early Feb with extensive lung, liver, lung, bone and node mets. I spent last night reading all the posts on this tread. Thank you. They were very helpful. I had a very scary talk with my onc yesterday. I am resigned and accepted. I am having a very hard time with my parents. I am on constant Ativan and have chosen to not think. I
I think tears have dried up.
On a personal note I live in CA with my dh and two girls who are 8& 10 and I am 40 years old.0 -
Hi formygirls, welcome to the group and i am sorry to hear about your diagnosis..u will find loads of support and advice here..and yes ativan is a life saver..
Hope your onc comes up with a super plan for u soon and wishing u get through this terrible time really really soon..and back to normal health..
sending u a loads of love and prayers and warm hugs for the little ones..
xx
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Hello, formygrils,
As on the other thread, I have no great wisdom. We all know something about the devastating news, more than a few of us have had young kids at one point in this journey.
re just brain mets, I have learned that it is not the death sentence or the end of my quirky personality.
We try to get Gamma Knife if possible, but WBR has been a practical cure for many.
Best if luck and Love to your family.
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I am glad to know I'm not alone in the tired camp. It has been a little over 2 weeks since my last radiation. The new normal is nothing like my life. It is rather amusing watching my husband take up my role. He has always done my heavy lifting, but this is ridiculous. I have always suspected he had OCD, but now I know it's true. He does all of our hardwood floors, 95% of our house, every other day. The other day he dusted me!! It is a whirlwind having everyone home, but never boring. Today we're going up to the coast, for my 51st. Should be wild. My grandies thinks this trip is for her!! Isn't everything? LOL When I get back, dr appts, scanxiety (stole it) and back to chemo. What a life. K-Lo, I would love to know more about preventig muscle atrophy. I do wonder what is going on with my right side, Mauimom, you are my hero. 2,4, and 6, are a lot of work. I am so glad you have your family. My girlfriend set up a website where my friends and family can sign up for making me and my family's dinners. I have dinners delivered thru the end of May. People truly are kind. I am a bit embarrassed by all of this, but my friends and family love this part. My advocate always says this about other people, not me.
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he dusted you Jodi?
how? with a feather duster..?
I never dust.. i am going to pay my girlfriend to totally clean and dust my furniture and woodwork.
i sure wish my DH was OCD.. he could live on dirt floors and never notice.
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I totally missed your post. I think you will find tons of support here. It is the most traumatic thing me or my family has ever been through. It really is a one day at a time kind of deal. I found the Adivan really helpful in the beginning. I certainly didn't want to be 100% involved. Little by little, I found I like being in control most of the time. Now I do take it to sleep. That's it. I think you are young and so are your girls. Think of the teaching you do everyday. Picture things the way you want them to be. We have as much control of the future, whether we horriblize or glorify it. If it's bad, I am not living it twice. I thought my tears had dried up too. I don't think they ever will. I love my life and I don't want to miss any of it!! I will be 51 tomorrow, and I think I'm too young for this BS. I wish you 50 more years. Take care and see the very best Drs. Hugs
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With Pledge and a dust cloth. My girlfriend and and I couldn't stop laughing. There is not a bigger smartass out there. His mom, who I adored, told him teasing is a form of bullying. I don't think he heard her!! How are things in your neck of the woods?
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he must be a nut..
i have the best husband.. i am really not the 'couple' type of person but he is. I try and we get along great.. kind of bittersweet now knowing my days are numbered.. We are both so hardworking we don't allow a lot of time to be together... but I am going to really focus on that now. Sometimes i think that if I am hateful and standoffish he'll have an easier time of it..
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Aww Apple. I repeat myself, I tell DH how fulfilled I am and how life is short for us all and we have to learn to have fun every day. We have a great crew of friends and they will surround him. I picked out someone for him, the only one who can handle him... he may want to pick his own. But we all know, someone is going to pass before the other. Some family member or friend will have something happen. I just realized, this is not my fault, their grief.
Our days together now are gravy and blessings. Corn alert!
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i'm thinking of finding a new wife for the DH.. he would actually love raising a new set of kids for fun. this place is so fantastic. I have two very good friends.. One has adopted 6 and the other has adopted 4 special needs kids. it's odd that they are MY friends.. i just think the world of them..
maybe finding a wife a stupid idea and i have to worry about my kids too. my daughter is almost 13 and going into the puberty, hormonal, super rude stage. i had a long talk with her yesterday about how i wanted our last years to be special and conveying how i absolutely hated my dear mom at the young age.. it was a good talk.
My 3 nephews live in El Paso.. own a big boot factory or something. Anyway, all 3 of them married super high class (RICH) women from Mexico.. they are SO beautiful, SO fun, SO delightfully snotty, learned and so into clothing and makeup. I am the best of friends with them and they would host our whole family for a year, gladly.
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Here they are! finally some tech-y success : ) happy sunday everyone. 0 -
wow.. they look so Hawaiian.. i used to be friends with two sisters.. they didn't look alike they had full blooded Chinese and Hawaiian parents and one looked like the dad and one looked like the mom.
they are soooooooooooo adorable and you conquered the picture thing!
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I've started to write several times and for some reason or another I haven't submited my post.
I am 45 married 14 years to the best husband I can imagine with two girls 28 and 20. I was in banking, working in commercial lending prior to leaving to take care of me. I loved my job and wish I could be there. I have/had a great boss and loved not only my job, but my clients.
My oldest just got married a few weeks ago. She was suppose to get married at the end of July, but after my episode at the end of December in which they found the brain mets the doctor told my DH and girls to move the date up quickly. Well, I made it to the wedding - thank goodness. My two closest friends jumped in to help and without them I couldn't have done the wedding - We somehow managed to pull off a beautiful wedding in two months and it was very professionally done. Then my youngest daughter who is in college and while I was "inchorent" managed change her entire school schedule to online classes, move out of her dorm, rearrange her entire schedule to online courses and come home to help take care of me. I did not realize how hard online courses are...........she studies constantly (she has 15 hours). Her professor has a planned course for her because of an internship in DC he trying to get her in.
Anyway, my initial diagnosis was in 2009, went back to work January 2010, the mets were discovered Feb/March (i think) 2011. I tried working while in full treatment, but it was getting the better of me and I was starting to miss a lot of work. I felt it wasn't fair to my co-workers or clients to not be reliable so I took my leave of absence that we all knew was going to be permanant. I cried like a baby, I was like a toddler who wasn't ready to leave the playground.
In addition to work, my second job was CEO of our home. I came home from the hospital, hired DH to take over and began organizing everything to transfer the work to him. I am very OCD and luckily last year I went through a major clean out, so it wasn't too hard "get it together". He and I work the household together now, and honestly I wish I had done it years ago, but it took cancer to teach me to "let go" with my OCD. Oh well.............it is what is is and it takes some of us longer to learn to relax.
I am still struggling with dizziness, off balancememory, and serious bloating along with other SE's and everytime I try to wean off of the steriods I end up in the ER. I am now using a walker and wheelchair because my legs are getting weaker, I think from the mets on my spine and brain. I've also had to start using the chair in the shower because I can't stand very long unassisted or sit in the bath (my favorite) because if I go all of the way down I can't get myself up, DH or whomever is there has to actually lift me up. But............all, in all I wake up every morning, get to have coffee and read the paper with my DH and be home with my family and friends. I do love my life, the good and the bad.
I'll stop, this is long. (((hugs))) to all of you - Jenn
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- Mauimom - What cute girls! Thanks for sharing!
- Jenn3 - A lot of young people are selfish, but your girls sound like winners, very loving and caring. You and your husband must have done something right!
Sorry you have to deal with SE's but you seem to have positive attitude. - To Fellow Brain Met Buddies - Sending gentle hugs!
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oh jenn.. big hugs to you.. and your youngest daughter. it's not fair that our lives must affect them so. you do indeed have a wonderful attitude.. just wonderful.
i too love my life, even when compromised.
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Jenn, your life sounds filled with love and devotion from your husband and daughters. It's not fun to be thrown a curve ball in life, but I am a bit jealous of those who step up to the plate. Your daughter sounds wonderful. School is fabulous, but so is figuring out what it is that makes life worthwhile and meaningful. It's been so humbling having people help me, when I have spents my entire adult life being the caregiver. As our kids tell me everyday, it is now me who needs help. I don't like it, and I doubt I will ever get used to being needy, but it is what it is. Isn't it amazing how we adapt to change, when we have little choice? You have been doing this a lot longer than me, and I admire you and wish you the best.
Mauimom, Your girls are beautiful. They look a lot like my sisters and I did when we were little. My dad was from Honolulu and was 100% Portuguese. In fact, when he died my son Chase, said he looked like Osama Bin Laden, and behaved like Ghandi. He really was one of the nicest most peace-loving people I have ever known. I don't think I ever heard him raise his voice. I think it's so sweet that they have each other. I adore my 5 sisters. We receive information the exact same way. It's the strangest thing!!
Hey Apple, isn't it funny when you get 'your notice' in writing, you let the stupid stuff go. I tell anyone and everyone, I have been given notice, but everyone is on notice. Don't harbor stuff. It's rent free, and it is just plain stupid. Be nice. You don't have that kind of time. I know I don't. It's hard to grasp the fact that I am 51 years old and I don't know if I will be here for 52. It makes me incredibly sad. I know that everyday is a gift and I want to be here for whatever it brings. Sorry. I am rambling. Hope everyone had a nice weekend. Hugs.
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Mauimom - Your girls are gorgeous!
Jenn - What your youngest daughter did by moving home to study is a huge gift of love and support. Especially unasked. She will never regret it.
I am really enjoying reading the stories behind the diagnoses - has anyone noticed what nice people we all are?
Have a good day, everyone,
Barbara x
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so banjo.. what time of day (in Germany) was your post written?
It really is nice not being defined by cancer.. the brain cancer shit is some scary stuff.. It's nice to have this secret little club of super nice people hidden behind the brain mets title.
cheers.. wish we could all get together for tea or beer. (i'd be choosing the beer)
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And I'd be providing the beer... I wrote my post at about 8am sitting in bed with my laptop while waiting the right length of time after eating to take my Xeloda. I'm trying to keep the tablets 12 hours apart but it means I need to eat by 7.30 in order for my evening meal/tablets not to be too late. As I've had no side effects yet, I'm trying to stick to this regime.
I have certain music I play if I'm not feeling wonderful - Chopin to console me, Haydn to cheer me up and Handel/Mozart to organise my head. But every day recently I have found time to play the Youtube recording of Vox Scaniensis (a Swedish group) and their version of Monteverdi's 'Beatus Vir' - it is so clear and pure and undecorated that it fills me with joy, a great start to the day. http://youtu.be/84RFTReP090
7.30pm here now, hope everyone sleeps well tonight,
Barbara
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Banjo.. i took Xeloda as early as i could. (easy because i rise at 5.. and do my office work for a couple hours before raising the family. I love getting up early because life is so darn wonderful. i sure hope i get to go to heaven.
. a few bites of breakfast (which i haven't been eating till recently )a Xeloda at about 7. 15.. .. a bit of time then the rest of my breakfast..
i then took Xeloda again during or after my dinner ( the final meal). I had no digestional issues, knowing that if i surrounded the Xeloda with food before and after that the pills would not bother me gastronimically.
I cook huge dinners 5 or six times weekly.. the meals are nutritional and full of veggies and fruits.. the leftovers are good and they get eaten for lunch by the DH and his brother the next day.
.. my family is healthy, altho my hard working, always working,. husband and oldest son - ( a working-out nerd type of guy) both need a LOT of calories, so i fix meat of some sort.
son # 2 is naturally slothlike and kind of fat. (said in a kind way). I try to get him to think healthily but he doesn't. he just loves food. he is unbelievably pleasant tho and sometimes chooses to forego the cheese and salami and mayo for a bit of a show of healthiness., . He loves sandwiches,, big, big sandwiches... he finely choppes the lettuce, makes his own dressing and artfully arranges the meats. kind of OCD about food just like me.. His older brother kind of keeps him in line " Dude I am not going to give you a ride home if you eat that type of sh*t." he actually helps him quite a bit.. teenagers apparently don't like to listen to their mothers. ( my DD is super hormonal at this space in tine).
i can hardly eat dinner... I'm glad I am enjoying soymilk, ice cream, fruit and yogurt. I never have eaten canned fruits, but had found that lately they are just perfect.
i am such an old lady these days.. next thing you know i will be eating the 3 stewed prunes thing for breakfast. We've had the best mangoes and strawberries lately.. super yum.. i am not supposed to eat grapefruit.... it's my favorite and sometimes i do.. f*cxk cancer.
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I have difficulty eating dinner but can eat quite heartily at lunchtime. I seem often to cook dinner but then have a crispbread with something instead and have my uneaten dinner for lunch the next day. This means when we sit down to dinner my husband eats away happily and I tend to pick at it or don't even bother dishing any out for me. I have no idea why I can eat normally at lunchtime but really don't want anything in the evening. After the evening Xeloda, I try to have something extra, a handful of nuts or something just so I don't feel guilty for dining on a crispbread!
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I typed up this long post and it's too late to retype it. But, for now I will just thank you for all of the kind words. I think my girls are pretty fanastic, and again thanks. I redo the post tomorrow.
Jen
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What does anyone know about the Hoarse-Voice - Xedola connection? I'll ask Onc today but she usually says , "I dont know what to make of that"
I hope you women will eat one fattening thing a day that you really love and let the other small meals be healthy. I will never be too thin as long as there are Frosty's, apple pie w/ ice cream, ummm, avocado w/ sour cream.... beer (well, NA beer but it has carbs), Target pizza w/ goat cheese and spinach---- "organic"
Ok just popping in for old times sake.
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I lost ;my voice about six months.. ago while on Xeloda my onc. said it is a fairly common SE. .. it seems i have permanent laryngitis.. it's VERY irritating and my voice is quite not loud enough.
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Hello all just want to check did anyone have dull aches/pains in head lasting just a few seconds after WBR..? mum has this new side effect and wanted to check if anyone else felt the same..
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Bestfriend, I cannot speak for everyone but I could live on aspirin and advil. I have never had headaches like the ones I have since radiation. I hope your mum feels better soon. The headaches have lessened in their frequency, for me. Apple, I don't have larygitis, but my voice is way more quiet than it has ever been. It wasn't during the 6 months, I took a boat load of Xeloda. In fact, other than losing every strand of hair I had, I have never really had a side effect from any chemo. I have been on 3 different chemos and anti bodies, and just started Taxeterra (sp) one dose, pre diagnosis and WBR. I start up again next week. The only thing I have noticed is this new drug effs up my blood, which is calling for injections 5 times in 5 days, after I am infused. Oy. Hugs.
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So happy I could share a picture of my girls with you amazing women.. They, along with my husband keep me going through this craziness. No matter how exhausted i feel at the end of the day, I can seem to rally to at least do one fun thing with them.
Wondering if anyone else has felt like their entire body is bruised - I don't see any actual bruises, but just feel sore all over. And I feel alternately hot and cold all the time - dont know if it's the wbr, the decadron, or if I'm just sick??
Sending you all positive thoughts and energy...
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mauimom, I blame everything on the radiation and the steroids. I have never felt this many kinds of blech,at one time in my life. But like I said, I have never had anything wrong with me. This is some kind of messed up. I want my normal back!! I am so happy you have your family. They are the best huh? Hugs and Aloha.
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normal,, i can't even remember how great it was.
i am cold, hot, sore, congested, headachey. .. it's hard to eat.. food is not a joy anymore and i was a friggin chef..
its' still all good tho.
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Apple, your attitude should be patented. Thank you!! My normal is NOT all over the map. I was born lucky gawddammit!!! Hugs.
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