INSOMNIACS place to talk in the wee hours
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I saw one at JoAnn's that was a tote bag with kitties all over it.
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I worked with a Gal who managed a bunch of Cardiologists who handed out lovely bonuses (not BMW sized type-normal). So one year we went shopping and got a really nice well made couch, 8x10 oriental rug and I forget what all. But at any rate we blew through her bonus in a weekend. It was so much fun to help her find things that matched the photos she was trying to copy.
When my DH was in consulting and the company did well they handed out bonuses. I would let him have a little and then squirrel everything away in college accounts for the kids. Poor guy. The practice paid off! My DH's weakness is electronics.. I remember our Apple computer died and shorted - burned. I went to work and during my lunch break called home- He had already gone a bought a new computer in the few hours I was at work! I couldn't even get mad. Wife gone - no one to say "no". Computer busted - EMERGENCY! Shopping in QUICK order!!
Chevy it's 66 degrees here and sunny... we are all walking around somewhat stunned.. this is not normal. Lovely, but not normal. I came back to edit this since I saw the news and we broke records! 66 degrees and the same for tomorrow. Warmer then Florida.. but so scary because our snow pack is 10%... no water this summer. ugh... stay warm everyone else.. I am so sorry!
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Sassy- yes, I remember him coming back with a box all wrapped up later on and he was quite pleased with himself!
Oh and another time this same guy was asking me what I was going to do when I decided to take a day off one summer day? I had plans to take my mother with me for a "spa day" to give her something for herself as she was taking care of my father who had advanced dementia at that time. Some friends of the family spent the day with him, so she could have the break. We went to this fabulous spa down in Westport, CT along the "gold coast" to a a place that had a total decadent NYC feeling to it. We had a lovely day with treatments, a little lunch there, our make up done at the end. We looked liked movie stars when we left.
So I just told this guy I was taking my mother to the spa for the day (nothing about the rest), and he said "oh don't tell my wife you are doing that or she will want to do something like that too!" And I said "so what is wrong with that?" Another vacant stare! I know, silly me, she was supposed to JUST be happy with her token sweater.....
I used to hear all kinds of crap from them when they would watch me go on ski vacations, or buy myself something, etc. They would say "you seem to do what ever you want with your money". The were the classic misogynists. I walked into a 1950's time warp back in 1990.....
Makes you want to break out in that song "you don't own me."
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Jazzy girl- I hear you! That was me in November. I had always wanted to see Amellia Island and Fernandina Beach in Jacksonville Florida.. so I booked a week and left! Ha! I never do that.. ever. It was fun. Me myself and I... at a B&B and I could go anywhere I dang well pleased. Yikes. I figured like I will see any of my retirement.. chit go use a little now.
Mammaray- I am not the person to ask about not following treatment. I have walked out on many... done with this. phooey.. There are consequences to riding off into the sunset or off into alternatives and uncharted waters. I'm a poster child for hey let's see what happens when you do this... an experiment on myself. Couple of walk-outs have been spectacular failures, amazing I lived to tell it. I guess my theme song will have to be.."Did it my way..." I don't even like that song..yuck... gag.
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MammaRay,
Not fair, you are so young. Dealing with this new diagnosis. What is the MO telling you? Treat it, radiation & AIs...or chemo?
Personally, since you asked for our input, I would do what they suggest. They have come a long ways in treatments. The thing about any treatment, if you start it, decide it's not for you, you can take a break, or try something else. You can still go with alternatives & supplements. I had aggressive chemo with my stage 3 dx. It was horrific, but I would do it again if it would give me more years.
How is your hubby handling this?
My DS turned 32 last week. I only bring that up cause I cannot imagine him having to face this, make all the tough decisions. Life is so precious. If you are not comfortable with your oncologists, try another. My breast surgeon told me he has a patient in her 20 th year with bone mets.
Hugs.....
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Hoping to get up to Yankee Candle's flagship store in Deerfield, Mass soon (another guilty pleasure). I try to go at least twice a year.
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Okay, enough of that silly stuff...
MamaRay... I know there are maybe threads on here about doing "alternative" treatment, but those ideas are usually from women who are trying soooo hard not to go through conventional treatments with SE's... I think it scares most of us, to have not gone through what we did, to get where we are... Oh wait.... write that down... that actually makes sense! I mean being so early this morning!
I have read, and known SOME women who have tried some weird, unconventional things... to cure them... And most didn't work out.. ONE friend of my Daughte's went to some foreign country to meet this John of God guy, who was supposed to heal thousands by just meeting him in his prayer groups..
She would not take chemo for her advanced stage cancer.. And she came home with her DH after that wonderful uplifting trip, and 2 months later, had to go on chemo, but it was too late, and by this time, that was all they could try..... I've even heard of "cupping"... It's supposed to fix you right up...
And like Suzanne Sommers, SHE has made lots of money with her ideas, on how she was "cured" of breast cancer...
It all depends on the size, stage, lymph node involvement, etc. as to how YOUR cancer should be tackled. "Complimentary" medicine, like Vitamins, healthy living, whatever THAT is are more accepted than doing nothing. SOME women will not even go through the surgery... I know of no-one who ever cured themselves like that.
So just talk to your team... and talk to me... I mean "us"... We will help you get through any questions you come up with... Take good care!
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MammaRay- I had a friend who had bc in her early 40s and treated it homeopathically the first two times, and then it came back everywhere the third time. Alternative medicine for cancer treatment did not serve her well. So please be careful about this as you decide what to do next. Remember you can also go see other doctors for 2nd opinions on your treatment options too.
I do believe complimentary therapies can help you to feel better through treatment. I have a friend going through chemo right now who says acupuncture is making a huge difference with her chemo SEs. Many doctors support the use of complimentary medicine, depending on what it is.
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mammaray.....I agree with the " do be careful".... As a hairdresser I hear and see lots of stuff. And you can read anything to support whatever your opinions are. Very confusing to find the right path for you. I was bombarded with alternative ideas from soooooo many people. Some won't talk to me today cause I didn't do what they said......whatever.....I told people that I, my hubby and my daughter were going to make the decision on how to handle this...all I ask for is support with our decision. We are all here to support you ray. My only suggestion is to spend a lot of time, quietly, in pray ( I know you are a prayerful person), and hopefully you will come to a peaceful place on a course of treatment. It is very important to walk your path. I don't know if this is making sense, but I have always been at peace when I followed my heart and not other people. At the end of the day, we have to be comfy with our decisions. Love you girl
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Mamaray, I agree with Susan and Chevy. I didn't follow the treatment plan for Adjuvant therapy --suggested 4 did one. But my only one was from start to finish a fiasco. I wrote the following on the 2D6 Thread
"Ironically, I have concluded that I am alive today because my genetics weren't known. Based on pathology, I had a very aggressive cancer. I was given the standard dose. It's pathway was through 3A4. For adjuvant therapy, my dose should have been reduced. This is based on my genetics as a intermediate metabolizer through that path. I had what's referred to as a relative overdose. Not enough to kill me, but almost did. Not the exact definition, but close enough. Then a second thing happened. The Hospitalist hung the wrong IV fluids when I went in to the hospital with a WBC of 1.5, Neuts of 0.5, and a temp 104.8. He should have hung Normal Saline 0.9%. Instead he hung 0.45% , also, referred to as half normal saline. That put me into Acute Renal Failure(ACR).
Relative overdose + ACR = Circulating elevated drug level for longer than expected because of no kidney filtration. The ACR was reversed by the proper fluids after the nephrologist evaluated the situation.
Important concept. Actually, if there was a decent science researcher reading this, it could be an avenue of research.
The problem is ACR is not always reversible. Thank God, mine did not become permanent Chronic Renal Failure(CHR), otherwise I'd be on dialysis.
Baker, I believe everyone should have their genetics done, but again the irony of the lack of genetics and the doc screw up, are likely why I'm coming up to my 6th cancerversary in Jan."
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Also,The nurses screwed up and didn't do Intake and Output. I was in urinary retention. The Cytoxan and Taxotere stayed in the bladder too long. That's why I'm at risk for bladder cancer now.
That admission was as I said a fiasco, BUT I"M HERE. Seriously, I think if it was studied there might be a consideration for a different approach. MY PLoidy was 1.79. Tops is 2.0. right on the path report it was written "associated with unfavorable outcome". I guess that's a nice way of saying not much of a chance. BUT I'M HERE.
With the brain tumor, I went to Dr.Google and found the surgery I needed. No one in the region was doing it. No one brought it up. My MO didn't know it existed. The Neurosurgeon not sure if he knew. If he knew and didn't say that's an awful thought. The brain tumor was benign, but it could have crossed the line to cancer. Plus, it was in a bad spot. So, out it came.
With the thyroid cancer the treatment has caused lots of problems, BUT I"M HERE. The info that I sent to the Nuclear Regulatory Commission will be included to help change protocols to protect patients not just in the USA, but around the world.
I failed all three AI's , but it's now known that my genetics were abnormal. The AI failure and the Cytoxan problem, plus the problems that DH had, have made me a fierce advocate for CYP testing and pharmocogenomic use in treatment.
I'm the opposite from alternative I guess. Yes, they're supplements I do. On the flip side. They're things I do that are considered awful for a cancer patient. I smoke and I imbibe when I want too. Green vegetables--aversion these last few years. Exercise start & stop. Start & stop. I'm not a cancer wellness poster child.
Had a hyster and ovaries out in 96 when identical twin was dx'd with ER+ with one positive node. Talked her into it too. It' wasn't considered part of the treatment plan in 96 for ER+. It is now. She's still here too. That's 19years for her. Would she be here if she didn't have the ovaries out. Don't know, but she is. She couldn't take tamox(forget why) and she had chemo. DUH, she has the same CYP abnormalities. Her chemo was a relative overdose too.
Almost, forgot I was in the prophy bilateral mastectomy pipeline. Mammo was clean. MRI found the BC. If I hadn't been in that pipeline. I would have had a mammo the next year. TOO late. Pathology aggressive aggressive nasty.
You need to follow the path you feel is right for you as Susan said.
The odd thing I've learned over the years of my life from early childhood (polio) is---- there is no rhyme or reason for what happens. OR it seems there isn't. That quote from MARK on "We know not the hour etc". is never far from my thoughts. Prayer is always in my thoughts when I'm not thinking about something else. Can't imagine getting through this without believing that there is something beyond this earthly existence. Curious to know what it is, but going to stick here until it's my time.
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Chevy- re-stripper songs. The best would have to be "You can leave your hat on!" Love that; cracks me up every time I hear it sung with his raspy smokey voice. What a hoot. You know my Mom got a call from my kindergarten teacher after I announced and sung a drinking song my college age Auntie taught me! I remember how horrified my Mom was that her lovely sister taught me that and I sung it to the class. "Some liquor was spilled on the bar room floor and the place was closed for the night. A little brown mouse that lived in the hole danced in pale moon light. He licked up the liquor on the bar room floor and back to haunches he sat....all night long you could hear him roar bring out --- damn cat! The moral of the story is... never take a drink on the house!" I love my Aunt.. she was SO MUCH FUN! Amazing I can remember every line of that song I learned at age 5 and now 51 years later... can't remember where I put my car keys! ugh...
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Mammaray- I didn't realize how young you are. To be deadly frank, breast cancer that hits younger women tends to be more aggressive and kills sooner. Of course I do not know the particulars of your case, there are exceptions to most all generalizations. So with that understanding and knowing that the only game in town is the current oncology system, you have no choice but to follow their recommendations if you want to live longer. There will always be the "asleep at the wheel doctor," so if you find someone humming along on auto pilot who doesn't pay attention and ignores you- change doctors, get a second opinion, read the boards and educate yourself. Alternative therapies can provide much soothing relief in addition to regular therapy, meds etc. I have tried and thought acupuncture was helpful. I wish you luck. Keep your eyes and ears and brain open. :-)
Read Chevy's silly posts and enjoy the things that make you smile. (Best medicine out there!)-adding - I would agree with Spookie that those who bet the farm on alternatives ONLY died sooner. So hedge your bet and try the main therapies so you can be around for when the cure comes!
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Rose,
your aunt sounds like my step-aunt who is a trip.
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ok to brag? BOOKED IRELAND, YIPEE!! My SIL and I are going in August. Got a great deal, I'll share the info if anybody wants it.
Mammaray, I wish you the best. Just hang in there. If you look at some of us, you'll see people still hanging around with stage 4 for years. Treatment is so much better now and then even 10 years ago. Just don't hide your head in the sand. You can and will survive this!!
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here's GS, finished putting his quilt together yesterday. First time he's sewn. He'll be 12 tomorrow.
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ROSIE!!!!!!!!!!!!! I LOVE THAT SONG/VIDEO.... Okay, here ya go! And I love that little story!
https://www.youtube.com/watch?v=hfgwrdYUQ2A 0 -
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ok. I'll go on record here. I am 100% AGAINST alternative treatments. Possibly one or two supplements, but to bet my LIFE on cinnamon? No.
Just ask Steve McQueen or Steve Jobs how that worked for them. Oh wait. You can't
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Hi ladies- been out and about networking for new work for my consulting biz. Got some good mojo going after today's meetings, and feel like I am on a roll! Several more meetings next week!
Speaking of shopping, anyone like Chico's? One of my favorite stores, but have learned to work the sales and coupons so I don't pay a fortune on the full price items. Today I did my personal best finding some great things on sale, special, with extra off AND a $50 off the entire order. Are you ready for the total of what I spent? $134. For that I got 4 pair of pants (including 2 pair of spring pants on special), a pair of bermuda shorts, a scarf and a bracelet. And I dropped a size too, which I am thrilled about. All that personal training and careful eating is paying off!
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you go zazzygirl! You'll have to show us. We want a fashion show! haven't shopped there much, didn't offer a lot in bigger sizes. Now, I'll have to check it out.
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woooHooo Jaz!! Way to go!!!!!!
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Smarty- check out their web site for things in bigger sizes. Their sizes are like 0, 1, 2, 3, 4 with some 0.5 in between. I saw this beautiful pink turtleneck there today that was a size 4 which I think is a 20. The gal there said they do carry up to the 4 in the stores too, but sometimes don't have everything so to ask.
I had been wearing a 2.5 on the bottom, which is like a 14 and down to a 2 which is a 12. So much more fun to say "I am wearing a 2 now" versus a 12. I see they have something called 000 and cannot imagine how small that person would have to be?
Will try to figure out how to do a fashion show for you.......
Oh and wanted to say the quilt is beautiful too and so happy you are going to Ireland. On my bucket list, some of my fathers family connects back to Cork County. I will look forward to hearing about your experiences after you go!
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So jealous, wish I was going to Ireland.
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Me too! Ireland sounds like fun! We are jealous Smarty! Enjoy. Love that quilt and your cute Grandson!
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Mammaray, I would try to get in with the people who sequence the tumor DNA to decide on the best treatment. That is the most promising trend in my opinion (disclosure, I have NO medical training whatsoever). Definitely get more than one opinion and find a doc you like.
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Chevy- I love the bunny picture. Bunnies have the cutest front teeth. I raised them as a young person and that picture is awesome!
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hi MammaRay,
Full disclosure before I throw in my 2 cents- I am an MD, though I haven't practiced medicine in about 20 years (I've been doing diabetes and obesity research, which I love) so my opinion is biased by my training. I respect alternative medicine and I believe that it can help many people. Just not instead of conventional medicine, especially with cancer. There are so many situations when it doesn't work and then by the time they turn to chemo the damage is done the disease has spread terribly and there is little that can be done. Steve Jobs is one example. The irony is that his pancreatic cancer wasn't even the nasty kind it was a different one that was perfectly treatable. So don't give up on conventional . If the chemo makes you sick talk to your MO about a lower dose, pain and nausea therapy or a different drug. If you can't communicate well with him/ her, change MO.
Btw, I am stage IV with a triple negative on carboplatin and gemzar. Sometimes it's awful sometimes tolerable and I have many good days. Everybody's experience with the drugs is different . For example a lot of people complained about xeloda - I had minimal side effects. I could have taken it for the rest of my life ! Taxol was easy too . Adriamycin combo was hell.
Use your options and see what works for you. and definitely do the molecular analysis if you can.
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Westmenster's on -USa channel. Last breed, then best in show. Predicted portugese water dog. Will be interesting.
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Yah they think that black poodle will win. So many cute dogs! Oy! I am smitten with border collies and they are not in Westminster. Which is a good thing since over breeding messes up the gene pool - breed borders for brains not looks.
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