Between the Devil ( the red one) and the deep blue sea
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Yay,Marybe!!!!!!!!!!!!!!!!!!! You are STUNNING! Thanks to you --- they are going to have to rewrite the oncology text books!!!!!!!!!!!!!!!!!!!
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Oh Marybe!!!!
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MaryBe,
Awesome, awesome news! I am overjoyed for you. Your Dad's party will be a great celebration with very happy friends and family to share all the good news!0 -
Marybe, I'm so happy for you!
Leah
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This is so awesome Marybe. You remind us that there's always hope!
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Holy Cow! That is awesome!
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Wonderful news!
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Marybe! WOW! Happy-lujah!!!
You are our very own wonder woman.
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even denosso is dancin fer ya marybe!!!!oops er jimmy fallon.3jays 0 -
GREAT NEWS, Marybe! Wow. Now, you just need to take it easy!
Lane
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Marybe - That is just great news. I am so happy for you. You have to be ecstatic to see so much difference from when you started on this drug. This is just wonderful news, gives hope and inspiration to so many others. I really admire you, you seem to have endless energy and get so much done. I feel like a slug half of the time and I am only taking Xeloda, which I am sure is mild compared to what you have been taking. My biggest problem is the hand and foot, can't seem to get the feet under control, fatigue and nausea, just minor stuff compared to so many others. Thanks Marybe for being such an inspiration to me
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That is fantastic news!!! Enjoy your nap and then PARTY!
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Thanks, Ladies. Yes, I am happy. I am always afraid to find out what the numbers are and even though I know they are not always an accurate indicator, I am always afraid they will have gone up and it might mean the Adriamycin is no longer working for me. So it is always a Catch 22 when I have them done....I want to know, but at the same time I don't. I know it can't work forever and also that I cannot stay on it forever, but I certainly pleased with the results we have been getting.
JeanieB2, Xeloda is really hard on some people. I really had no SEs with it other than constipation (my old friend who seems to never leave). My hands did get red, but were never cracked or peeling or sore.....I used bag balm, working Hands (think that was the name of it...comes in a green plastic can) and always wore gloves and socks to bed. I hope it works for you. I think with any of these treatments, if they work, the SEs are worth it.
Off to Dad's now with a car loaded full of stuff. All we are doing this weekend is cleaning and then next week will be cooking for the party. Have a great weekend everyone.
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Congratulations Marybe, great numbers.
The pork sounds so good to me.
HAve a fun party.
Ginger
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hey Marybe, such good news! Safe travels, good luck and Godspeed. ((hugs))
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I just knew you could get to triple digits, Marybe. Limbo lower now, and let's see if you can get under that 500 bar.
Hope your Dad's party will be a lot of fun, and so happy that you can be in celebration mode too. Did you get him a stripper? (Kidding!)
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Dear Marybe,
I am kind of new here, but have always looked for your posts as they inspire me. My tumor markers have always run true for me too and boy, do I know thanxiety they produce.
Anyway, this is a phenomenal drop in numbers. Ride this wave with no fear until till there is a reason to change your thinking. Take care of your wonderful self.
Love,
Terry0 -
Dear Marybe,
I am kind of new here, but have always looked for your posts as they inspire me. My tumor markers have always run true for me too and boy, do I know thanxiety they produce.
Anyway, this is a phenomenal drop in numbers. Ride this wave with no fear until till there is a reason to change your thinking. Take care of wonderful self.
Love,
Terry0 -
THAT'S why you can't go anywhere, Marybe.. WE NEED YOU HERE!!!
im actually glad you came back, even if the new board drives some of us crazee. im getting used to it..3jays
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The only place I am going right now, 3Jays is to my Dad's. Tim took a load of stuff up there for me today....chairs and a table for the backyard although it will be way too hot to sit out there....but someone will have to since we are grilling the brats. I would love to sit out there, but am not to spend much time in the sun without a sunscreen and I need to look halfway decent so am not going to slather sunscreen on myself ( will when I am in Florida though) I started worrying about driving after work tomorrow so got the other hygienist to work the afternoon for me. When I get off in the morning I am driving to the Party Source in KY to check out their German beer ( eine bier, bitte) and will meet my friend Kathy there who is bringing me a warming tray and a crock pot. Most of the stuff is going to be in crock pots...I have gathered up 6 stainless steel ones so far. I bought one of those big plastic containers like a jug with a nozzel tonight for lemonade....could have borrowed one from another friend, but there comes a time when time is actually more important than saving money so I just bought one on the way home from work. I just finished mixing up a batch of springerlies which have to chill for an hour....then I will roll and stamp them out and bake them in the morning before I go to work. My father and cousins LOVE springerlies and normally I only make them at Xmas. I am having those, apple strudel and the carrot cake birthday cake for dessert.
I don't have to worry about getting tired tonight. Today when I was getting my treatment I asked the nurse Is my stuff mixed up yet and she said no they were working on it so I then asked her if I could get more decadron? She asked You want more? Most of the patients want less because the can't sleep. I said I know that is why they cut my to just four because I couldn't sleep, but I have a very busy few days coming up so not being tired and having more energy is just what I need. So she went back and asked the PA and they gave me 8 instead and I am NOT sleepy, that's for sure. Problem is I will probably crash Friday afternoon.....oh well, my cousins can go on a tour of the town with my Dad and I will take a nap. We are all going out to eat Friday night. She told Dr.Cody what the podiatrist had me doing for my infected toe....the tincture of iodine and the antibiotic cream that this particular bacteria is supposed to be sensitive to and he agreed it was enough and I can see it is getting better. I wonder why only the one toe got infected since I lost the other nails as well....but I sort of think this one was not ready to go and I did help it along in coming off. I am one of these people who love to pic....have horrible mosquito bite scars....my grandmother was a picker also and once Mama told me I can from a long line of pickers, but my mother was not that way, just her mother and then me. Anyway, I am just going to allow any nails to come off by themselves from now one. Several of my fingernails are almost totally beige.....look like they have been painted with an opaque paint.....like an enormous French nail.
Anyway, I will be glad when this weekend and the next week are over. My sister isn't coming til Monday since she thought the party would be on my Dad's actual birthday (30th) and it would have cost a bundle to change their tickets. She and her boyfriend will be here til Sat. So I will bring my Dad back to Cincinnati with me and we will be here for at least a few days and I know she will then be wanting to go to Daddy's to see what I have done to the house and to visit some people there. I am working most of the time, but am taking Wed. and Thurs off (but will get treatment Wed. AM) and then only work in the morning on Friday and of course will have my normal day off, Monday which is when they fly in. We will probably go out for dinner on Monday....or maybe we will be eating left over party food. I have no idea how many are coming...think around 50. I invited this one man from Rotary Club and left the message with his secretary...she said when I told her it was German fare, Oh I know he will come if he is able to. Then I was on the phone later with someone else and she called back and left this message that he thought it would be a great idea to tell Rotary CLub and that he was going to send out a mass email and that I might have a lot more guests than I planned on and he would do this unless I thought it was a bad idea. I immediately called her back and hope I was not shouting, but told her It is definitely a BAD idea! Jeeze I don't want 100 people showing up and don't want to be running out of food.....also he invited the people he wants to be there from Rotary already. I know the man meant well, but just didn't think that would be a good idea at all.
So now that I am going to have an extra afternoon and am also probably not going to go to sleep tonight, I will have the cookies ready to bake, will get my suitcase packed and will make a list of all I want to put in my car tomorrow. Today my friend was at my Dad's and cleaned and she also turned the meat for the sauerbraten.....I had told my Dad not to even try since the crock it is in is really heavy. You are supposed to turn it two of three times a day, but since it is almost completely submerged, I don't think it is going to matter all that much.....I am not overcooking it so I can slice it and it's going to be for sandwiches as well as the pulled pork. I think I will go ahead and do the gingersnap gravy and am also thinking of having some caramelized onions....those would be good to put on top of the pork along with sauerkraut.
I think I have all my supplies purchased now except for beer and ice and I will get some of the beer tomorrow at the Party Source.
We did not do tumor markers today and tomorrow they will let me know if my potassium levels are higher. We will probably do the CA 27.29 again in three weeks. After my sister goes, I work most of the next week and then go to visit with you 3Jays and then a few weeks after that will be going again to visit with BarbA.
I told the PA, my hair is growing and she looked at it and said Ya really think so? Yes I do....the women in the chemo room do also and they told me you have to have done chemo to be able to see it the way I do. The PA has long blond hair halfway down her back.
I am going to go read now and let my dough chill. I got Kathy Rich's book about The Red Devil and am going to start it when I finish the book I am reading now. Is it just me, or does anyone else find it odd that they are not making a big deal about her passing away? I mean, Jeeze, she was a Stage IV legend. Maybe there is a thread somewhere and I just missed it, but I do know it upset me a lot and made me very sad.
Hope you all have a nice weekend.....am just hoping I survive mine. Marybe
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Those fried balls look delish! Want to eat computer!
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Marybe, im sending you an email later.. still jazzed up myself.. went to dinner for murs mothers 82nd bday tonight with the grands.. Fischer can't wait to meet you! he requested tonight if he can go to butterfly world with us. i told him we weren't going, anymore.. just in case you won't feel up to a 4 yr old!!
im feeling tired tonight, but i got exhausted, reading all you're doing..
Good news for me.. i had the tumour markers done last week, NED 3 years later!!!3jays
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Holy Cow, you could switch careers and be a party planner! I hope you are planning for a little relaxation time after the whole party extravaganza is over! I am tired just from reading about it too. Hope it is a grand time for all!
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Marybe:
Not only am I tired from reading all you are doing/going to be doing - I am feeling very much like I am at your Dad's birthday celebration - and I am starving!
Hugs (big ones), Sandy
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Marybe,
You make me feel soooooo lazy! I set one goal a day for myself and am so proud when I accomplish it. Have a wonderful weekend. You are one heck of a role model!! Happy Birthday MaryBe's Dad!0 -
have fun, Marybe, it's a lot of work but s/b worth it once you get to sit down, relax & enjoy.
I sure hope the extra 50 Rotarians don't show up! ((hugs))
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Have a wonderful party Marybe. With all of your planning it is just bound to be super.
Hugs Ginger
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The party went well, but since I am seldom satisfied with anything, I was disappointed with the turn out. I counted 36 people and was hoping for 50, but in part it was my fault for being so unorganized. When we had the 80th, I sent out invitations and this time I sort of left it to word of mouth and also told my father to invite people. Big mistake as he really didn't ask anyone himself. So of course this meant I had tons of food left because if i am expecting 50, I make enough food for 100 and many who came did not even eat!! I sent a lot of leftovers home with friends who stayed to help me clean up after the party, sent about 6 unopened packs of brats and mets home with my cousins (they can't get the white brats in MO for some reason, and also cannot get Barg's red cream soda which they always stock up on when they come to OH). Then on Sunday I had people come over to get leftovers and I was still sharing them when I got back to Cincy. My boss loves German food so I took a regular smorgasbord to the office and I am still giving out carrot cake. Since I didn't know if everyone would like carrot cake, I also made apple strudel (which we were eating for breakfast for days after the party) and also springerli cookies.
My one cousin did all the grilling and the other helped me peel the potatoes for the potato salad (could have gotten by with 5 lbs and I made 15). And then some friends came and help me set up. I will never make sauerbraten again.....everyone said it was good, but I thought it was dry even with the gravy . The pulled pork was very good, but even after giving it away, fixing it for barbecue one night for dinner while my sister was here and taking a ton to the office, I still have a whole bag of it in the freezer. Moral of the story, I need to start thinking on a smaller scale, but as one of my friends said It Ain't gonna happen.
My father was very glad to see his brother, but my poor uncle who has alzheimer's has really gone down hill both mentally and physically since we saw him last fall. He uses a walker and is very unstable on his feet. He used to know most of my friends since I was always dragging someone out there with me to visit in the summers and my Uncle was the best host ever....he would take us out to eat, to Eureka Springs, to shows in Branson, out on the lake in the pontoon boat and we would just have the best time.....now he doesn't even recognize those people, but he does often talk about the river boat cruises we used to take on the American Queen and Mississippi Queen. It is very sad to see him slipping away and for the lst time my father is actually accepting the fact that there is something wrong with him.....before he used to say, Oh my brother is just fine.
Tim only came for the party and then drove back home since he refuses to leave the dogs alone for very long and I did not want them at the party after the way they got into a fight under the DR table Easter....it was like the table was levitating and sounded like a dog fight at the pound going on under the table.
I stayed from Thurs night (went after work on Thurs) until Monday. Brought my Dad back with me. My sister and her boyfriend flew in from OR. on Monday and then they went to my Dad's Wed. AM. I went Wed. afternoon after my treatment and then came back on Thurs since I had to work. We celebrated my father's actual birthday at a restaurant on Wed. evening. We also had a cake when we went out to eat on the previous Friday night while my cousins were here. I am sure I put on the lbs this past week since it was pretty much an eatathon. We took my sister and her boyfriend to the airport yesterday morning and I must say I am happy to have no company for awhile since the week pretty much left me exhausted. I told someone that even if I am still alive in 10 yrs and if my Dad lives to be 100, we are NOT having a party since every 10 yrs it is tougher to do.
Yesterday I did just about nothing....cleaned out a closet and watched movies on tv. Finished Kathy Rich's book about her cancer experience. I am still upset over her passing and wish I knew what it was that finally did her in, but guess we will never know that for sure. She did a lot of the same treatments I did and I am just so sorry I did not read the book earlier as I would have some questions for her. I did used to PM her because since she had been at it so long, she was my hero. I seriously doubt if they would even consider me for a bone marrow transplant. She talked about the breast cancer forums and how there were some fights on them.....I wondered if it was BCO, but this was in the 90s so I think it may have been another one. Women will always be catty and opinionated so fights will always ensue....it's our nature I guess.
Well, it is a lovely day here so I hope to get some errands run. Next Friday I am flying to Florida to visit 3jays and then later on will be visiting with BarbaraA. Not a very good time of year to be going to Florida, but I am going to visit people, not to sight-see and go to the beach.
I hope everyone is doing well and sorry I have sort of been MIA, but I have been busy. I think next week we will be doing the CA 27.29 again, but I may just tell them to hold off until after I go to Florida. My right big toe culture came out to be a staff infection so we have been treating that for about 3 wks now. My nails look bad, but oddly enough are not infected the way they got on the abraxane....have been using tincture of iodine on them and that got rid of the odor, although now they smell like ammonia. They are keeping me on potassium until the levels get back to where they want them. White count is up to 3.2 so that is an improvement and I in general feel fine. Every day is an adventure, that's for sure. The Adriamycin still seems to be working for me and that is what counts. Oh, my hair is growing!! Pic with all the gals is most of my dental hygiene class.
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Pics didn't show up on other po
for some reason other than the cake. 0 -
Late to the party As usual! Congrats on the great drop in your numbers and your dad's party. I am a true slacker when it comes to cooking en masse. Hope you can just sit and relax for a bit.
Caryn0
