Brain Mets Sisters
Comments
-
Apple, that was funny!!! I am so looking forward to the tropical weather. I have been in a foul mood for days!!!
0 -
Jodimomoffour, I was only put back on them a week ago (just 4mg a day) to help with the dizzy/nausea episodes (they and I suspected the brain mets were back and causing a problem) - I have felt wonderful this week because of taking them so am not too bothered. Now that the brain scan has been found to be clear, maybe I won't need to take them anymore - I have a spine MRI next week and will talk to the oncologist then. At the moment it is lovely to have a clear head and increased appetite (although I will need to control myself - it's so great to enjoy my food again that I'm in danger of sheer piggery). The waves of nausea still need investigating but I'm not so worried now I've had the scan. It's definitely not the Xeloda.
0 -
Congrats!!! I'd like to say I'm jealous, well maybe I am, but I am super excited for you.
Jenn
0 -
you will definitely need to drink a beer in our honor banjo and I'll do the same for you.
0 -
Way to go Banjo !!!!!!!!!!!!
0 -
Actually, we celebrated last night by going for a Greek meal (the first time I have wanted to go out for a meal for five months because of the eating problem and it used to be something we did regularly). I haven't had wine for all that time either. Had some amazing grilled fish and then baklava (haven't been able to eat anything sweet until now) and two glasses of wine and an ouzo - didn't need the sleepy pills last night... I don't know how long this reprieve will last but we were so happy to be out again enjoying ourselves; it was wonderful to feel more normal than I have for the last half year. My husband had also booked a flight to Scotland because he wanted to go to an old friend's birthday celebration but he was so scared about my scan that he decided not to go. He relaxed so much yesterday evening that he flew out today and is having fun - I'm so happy that he could do this as he needs to get away from the cancer and he could do it with a clear conscience.
0 -
some day i will tell the story of 'Aunt Trudy', an American i met in Greece and Ouzo. egads that stuff is strong.
0 -
Banjo,
So happy to read your post. It made my day!0 -
Apple tell it now. Your stories are wonderful!
0 -
Yes, tell...
0 -
Yay Barbara!
0 -
congratulations barbara..!! so so glad..!! xx
0 -
i really only have time to write on the computer in the early morning.
After college, I applied for and received a grant to work on biblical manuscripts in Greece. I had studied Greek and Latin (my dad had taught those subjects) and I imagine I was the only one who applied for this grant because I got it. Anyway, when I got to Greece, there had been a massive earthquake the day before. The library where I was supposed to work was torn up, fallen down, and the manuscripts because they were holy or revered, had to be in a protected place. They moved the manuscripts to Mount Athmos, which forbade women from stepping on the land. Anyway, I lost the grant before it even started and since I was already in Greece, I got a job as an Au Pair for an American couple with 2 young sons and worked at a hotel... also as a field hand (eggplant picker).
One morning Aunt Trudy arrived and the couple begged me to show her around town. She wanted to go shopping so off we went. It was about 9.30 and she suggested we step into a café for coffee and ordered 2 ouzos... 9.30 AM! We went to a shop and then stopped at another ‘café'. Then another. I tricked her into thinking I had to visit the bathroom which was an open square of marble in an enclosure without a roof, behind the restaurant and took off. you had to put your feet on these little platforms and kind of squat. It took me about 6 hours to find my way home. I think I remember taking a nap on a bus stop bench. I took the wrong direction on the bus, and stopped in museusm.. The couple understood.. They knew Aunt Trudy tho probably should have warned me about the possibility of overdosing on ouzo.
It' actually very tasty in proper amounts - opa.
I liked the food in Greece. I bought horsemeat to cook for while, thinking it was ground beef. The whipped cream on pastries was made of goat's cream and they poured a ladle of olive oil over moussaka when i ordered it. the market was fantastic and i saw a whole population run into the sea and grab what I think were sardines (or maybe anchovies) and eat them raw. I tried to try one, but couldn't quite do it. I returned to the states and got a job with this fantastic Lebanese restaurant owner and chef who used to cook for Ari Onnasis and learned how to make many delish middle eastern dishes.,
4000 spanakopitas later. - did a lot of catering for the wealthy wealthy Lebanese.
When i first arrived, i had only eaten cheese and bread for a week (very cash poor) and was terrifically constipated. Not only could i not find a place to stay (everyone else was sleeping outside in the parks and squares, so no one noticed me). I went to this pharmacy daily trying to convey what a laxative was. About four days later i drew a line drawing of a plunger next to a woman's butt... you should have seen them laugh. the couple were holding onto themselves so they wouldn't fall down.. By that time i had eaten 4 days worth of rotten peppers and those delicious tiny little oranges (kumquats)that you eat peel and all, that grew on neighborhood trees, so i was pretty much fixed. I still have that drawing. It kind of looked like this famous Picasso.
0 -
OMG Apple. You have some amazing stories. Thank you for the morning laugh, you've set the tone for my day.
0 -
Apple, I love it. So many people, especially girls, are afraid to embrace life that way!
0 -
Thank you very much. You have a gift for story telling. I know you have many things you want to get done, but have you considered the significant legacy that getting these stories down would be?
0 -
Love any and all good news!
Apple, your story was funny!
Jodi, one of my surgeons also told me to stand on my weak foot..."like a pelican". That will allow the brain to start re-doing those pathways. She did suggest holding on to a counter or piece of furniture...but I think it makes sense...all of the above, and keep working at it!
0 -
Hopbird, thank you. not bragging, but I was always balanced and super bendy. I can still sit in bizarre positions, and can touch the floor without bending my knees. Now, I can't walk 2o feet without something to touch for balance. We were up at our coast house this weekend, I literally had to hang on to my husband just to get past the pavers!!! I have always disliked that pathway. Even when I could run!!! Barfed on the way to house and on the way back. I have never had car sickness. Obviously I do now. It makes me mad because the drive was always one of my favorite parts. Playlist, hubby, and looking forward to the ocean and beautiful house. Sometimes this just sucks. Barfing takes everything from me. These chronic hiccups suck too. Thanks for listening to me whine. Hugs. Jodi
0 -
i start coughing.... and then i know i should start eating tums
0 -
Hilarious story, Apple. You've had some amazing adventures.
0 -
Hi Apple,
I've been up since four this morning (5am here now) - toast, tea and your story made a great start. You really should get some of these stories down; you've lived an interesting life. Have you got a favourite Lebanese recipe you could share with us? (I love lamb and middle eastern food). Have you thought of doing a cookbook? I shouldn't ask that as I know you're madly planting your garden and finishing your house. It's just my rediscovery of food that is to blame...
Have a wonderful day and thanks for the laugh.
0 -
Massage today!! I cannot wait to be rubbed for an hour or so. It's been a couple months since I had one. I do remember that drooly lind of relaxation! Hugs Jodi
0 -
SOB Kind ^^^
0 -
i would much rather have a massage than an MRI.
SOB
0 -
Fingers and toes crossed for you Apple.
0 -
(((((((Apple))))))))))
0 -
Congratulations on the great news, Barbara! I'm hoping for good news on Thursday.
Tiger Blood, I am almost four weeks out of finishing wbr and still have no hair...
Apple, sending clear, loving thoughts your way.
0 -
Hi ladies!
I have not been around in a whole for a few reasons but partly because I had an explosion of mets in January and didn't want to scare people! Lol.
I had a 3.3 lesion on my cerebellum, among many other body parts. I did WBR followed by stereotactic rads 8 weeks later. My brain MRI this week showed no new lesions and that my mass is shrinking great, down to a 1 cm. (still big I know but from where it was my rad pnc was thrilled and says it will keep shrinking). My last PET was good too, on TCH, all retreating! Yea,
BUT
I'm having bad headaches that my tad onc could not explain. Usually they go away with one lortab or two Tylenol so no biggie. For three days, until I started steroids for chemo nothing would help my headache......when I get up to walk it felt like my brain was going to shoot off the top of my head. Started steroids for pre-chemo, much better. If its not cancer I don't care, will deal. I'm worried about the possibility of leptomeningeal carcinomatosis, cancer in the spinal fluid. Only shows up on MRI 50% of the time. Need an LP to diagnose. It's very hard to treat with weeks- months typical prognosis.
If you read all that, bless you.
Anyone else this far out from rads with significant headaches?
I don't have noticeable swelling on MRI, and when the mass was 3cm, no headaches. My tad inc does not know why I have headaches, and I didn't think to ask about LCD until a few days later. I see my onc tomorrow.
Thank you so much if you read this and or can provide any insight or personal experience.
Hugs,
Lori0 -
Wow, Lori, that sounds positive/ My neurosurgeon says my headaches are not related to my brainmets. And then i notice that they move around, so I try not to think of it as any kind of sign. And we are under stress, are we not?
0 -
Yes, K-lo. I hope you are right. These headaches are just weird and bad.... Worse in certain positionsI have never had anything like them.
Thank you for some peace of mind though and for responding. Trying to catch up on everyone! Hope you are doing well?
Lori0
