CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.

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  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited December 2015

    Welcome 7of9, so sorry to hear what is going on.

    You are in the best company possible. I am too tired from hot flashes that kept me up all night to elaborate, but trust me. You can bring your troubles along with you, and we will listen and will not judge.

    Along the way, there is great food, haha, and much fun.

  • duckyb1
    duckyb1 Member Posts: 9,646
    edited December 2015

    We're with you 7.........image

  • Tomboy
    Tomboy Member Posts: 2,700
    edited December 2015

    I might leave crumbs, katy, but you can bet I will eat ALL those yummy olives! Well, okay, i will share... ; }

  • Jackbirdie
    Jackbirdie Member Posts: 1,617
    edited December 2015

    oh no olives for me. You can have mine, Tomboy! I love martini glasses but not martinis. I do like the odd lemon drop (or rasberry lemon drop or margarita in a cool glass. Just no olive. Anyway, I know we all leave crumbs. Crazy seal of approval!

  • cubbie2015
    cubbie2015 Member Posts: 773
    edited December 2015

    Zooming by to say hi to all the crazies. Christmas mayhem continues, had a Christmas program tonight and had to prep food for tomorrow's workplace potluck afterward. Just getting to bed now. Things should settle down tomorrow after the last Christmas program and the potluck. (Right?).

    7of9 and sewingnut, thinking of you.

  • chisandy
    chisandy Member Posts: 11,408
    edited December 2015

    I now have a matching blister on my right toe, thanks to the seams of my socks. Maybe airport security will take pity and let me keep my shoes on to avoid further injury (the left one popped overnight--ugh. Hope the cane results in the offer of a wheelchair, but DH would have to push it through Schipol, which doesn't provide attendants for those not wheeling solo.

    Waiting for shore call--had a triple-shot cappuccino and croissant for breakfast--eggs or fish made me feel queasy to look at. Will be offline except at airports where I have cell service. I get to wrestle with OptmRX tomorrow because they've yet to fill, much less ship, the Femara scrip my MO's nurse faxed them two weeks ago. Had to surrender luggage at 10 last night, and didn't want to lug dirty clothes in my tote bag. Slept braless (plain camisole) for the first time since mid-August, and it wasn't too uncomfortable. Nice to wake up without below-boob indentations. Will get a few stretchy tanks from Target.

  • Jackbirdie
    Jackbirdie Member Posts: 1,617
    edited December 2015

    ChiSandy- sounds like such a great trip! So sorry about the matching toe blisters. Safe travel home and rest up! Then pics please. The gelato sounded amazing!


  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited December 2015

    ChiSandy, I have enjoyed being in your back pocket on this trip. Thank you for taking the time to share the delicious moments. Am sorry about the blisters and hope you get humane treatment at the airport. Stay safe.

  • sewingnut
    sewingnut Member Posts: 475
    edited December 2015

    ChiSandy, sorry about the blister on your toe. I've started wearing my socks inside out so the seams don't press on my toes. We would tell that to our diabetic patients when I worked in the Drs office.

    On a comforting note, I am now riding in the caboose to crazy town watching the world go by for another 6 months. Everything appears to be stable at this time......On a maddening note, the diagnostic 3D mammogram that I have been getting has tripled in price from $45 to $150.....RatBastards!! This will be out of pocket if the insurance company denies as 3D is still considered experimental. Triple RatBastards!!!

  • SlowDeepBreaths
    SlowDeepBreaths Member Posts: 6,702
    edited December 2015

    7of9, Welcome to Crazy Town!!

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    I'm so happy you found us. Please pull up a chair and make yourself comfortable. Here is your Crazy Town kit consisting of a flashlight, magnifying glass, mirror and coconut oil. Best of luck on your core biopsy today!! We will all be sending out collective good thoughts your way. You have sure been through way more than your fair share. Great bigs hugs to you!! Please let us know how it went when you can.



    Sewingnut, I missed the good wishes before your appointment!! I must apologize for that one. I typically try to log on late at night for appointments the next day, but I was exhausted last night from holiday preparations. Doing the happy dance for you today, and tipping a glass in your honor!!

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    The increase in 3D mammo sucks!! Dumbasses!!!



    Rain, Today is your last rad and lymphedema treatment!!! WoooooHoooooo!!! Doing a happy dance for you too!!!!

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    Party time!!!!!!



    Poppy, I am a year ahead of you and it's just now starting to get better for me. I feel much less crazy than usual. Of course that may all change when they rescan the lung nodule in January. I just decide to forgo that scan...haven't decided yet.

    Katy, How are you feeling? Not sure why but you were on my mind last night. I got your lovely card. Thank you so much!!

    Chevy, I've also been sorting through many years of stuff. It is so difficult to throw things away. I tell myself I'm just going to get rid of it all, but when it comes time to sort it out, my keep pile is always huge in comparison. I even saved the tape readout from when my dad took his last breath. Loved the older turtles pic. Nice to know someone else has a unicorn besides me.

    Ducky, Is there any part of Christmas that you like?? I remember when I was younger and I went to church I always looked forward to midnight mass. The singing, candles and staying up late was so exciting for me. Christmas has never been the same since my parents passed away. I tried very hard to make it special every year for my kids, but now that my kids have grown there is that empty void. It is so different when there isn't a little one in the house. If I was there Ducky, I would help you with the emptying of your shore home. I can't even imagine what you must be going through. I have a difficult time throwing away slips of paper. A whole house of treasures would put me in a tailspin for sure.

    Gaia, I love that pic!!

    DF, Enjoy every second with your mom. I'm so glad she has you in her life.

    Mustlovepoodles, I am also a fan of Chick-fil-A salads!! I hope you were able to enjoy one!!

    Chi, Post pictures!!! I would love to see the places you're visiting!! Hope the blisters get better soon.


    Life has been really busy here at home. My DD and her DH arrived on Monday. He was originally going to stay for one night and then drive up north to visit his family. He decided to stay another night and drive out tomorrow. My DD and I are going for pedicures in a bit. She always keeps me hopping when she is here. Well, not really hopping because you all know I can't hop....but, you get the picture.

    Hope you're all having a pain free week so far. Love to all....quiet crazies too!!

  • Jackbirdie
    Jackbirdie Member Posts: 1,617
    edited December 2015

    yay! Sewingnut! So happy and relieved for you.

    Rainny- 😂😂😂🎉🎉🎉🎉👏🏻👏🏻👏🏻👏🏻👏🏻🙋🙋🙋🙋💞💞💞🙏🏻

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited December 2015

    crazies, reality check, please.

    The clinical care coordinator from the cancer care center called this morning. I was barely awake. Two nights of hot flashes and my mother waking me up all night has drained me.

    She said the MO had written me an email in response to my questions and concerns about AI drugs. I said I did not receive the email so the clinical care coordinator read it to me.

    The MO said she was not going to prescribe the AI drugs after surgery. The MO said the tumor is low grade with little chance of recurrence. Then, the MO went on to criticize me severely for sending the emails. I sent her the first email because she told me to contact her after a month on Tamoxifen. I could not reach the MO by phone so I emailed her a list of the SE's and she wrote back, said to go off the Tamoxifen and said she would prescribe AI drugs after surgery. I sent her an email in response two weeks later relaying concerns about bone loss and dental issues from the AI drugs.

    I sent the second email through the hospital patient health portal. I had received a welcoming email from the University hospital telling me I could communicate with the doctors through the health portals and ask questions about my care.

    After criticizing and excoriating me for emailing and bothering the staff with questions, the MO suggested I might want to consider getting care closer to home. How dare she? Patients travel from all over the state for treatment at this spectacular hospital. It is my right as a resident to receive care and treatment at the hospital. The nurse practitioner for my GYN doctor strongly recommended that I receive care at this top notch teaching hospital.

    I am frankly flabbergasted by this MO's nasty, rude, and over the top comments. I told the clinical care coordinator that the MOs response to my email was crappy. I also said the woman, the MO, had something missing and would eventually run herself into the ground. The clinical care coordinator wrote the MO and said I was tearful and angry and then went onto convey what we discussed. She did not say I was tearful and angry about the shitty email, but I wondered if the MO has stepped over the line before and if perhaps the coordinator was making a tiny dig at the MO. The coordinator did not say I was irrational or abusive or inappropriate.

    My take is that this skinny ass MO does not want to deal with the medical and dental issues related to the AI drugs. I think she has a screw loose in excoriating me for sending a couple of emails and calling the staff a few times with questions. She has a job because of me. She gets big paychecks due to grants from the Federal government and private individuals who trust her to treat patients with care and respect. She is a physician because she agreed to treat patients with all kinds of medical problems.

    At the end of the conversation, the clinical care coordinator asked what I wanted from them. I said nothing. I confirmed that I would be at the clinic for my pre op appointments on January 25 and my wire localization placement and lumpectomy on January 26. I said I would not send emails with any more questions. I don't plan to call the clinic under any circumstances. I don't want to endanger my treatment or alienate the two other doctors who are spectacular people.

    I don't have a copy of the email the MO sent to me. I think it would be wise to ask the clinical care coordinator to print it out when I have my pre op meeting with her.

  • rainnyc
    rainnyc Member Posts: 801
    edited December 2015

    Yep, done with rads! It's been kind of a journey (icky skin issues, and let's just say I feel like a piece of fried chicken, the kind that's been sitting behind the counter at KFC for a while under those lights, you know?) but at least no more rays going into my body. Said goodbye to the two rads techs on duty and the sweet elderly receptionist, who has bright red hair and a Caribbean accent. I still need to go in the next couple of days to visit my new friends in the wound care department. LE treatment: we put off the last one 'til after the first of the year. That I don't mind; the LE therapist is lovely and things are going in the right direction.

    Welcome, 7of9 and others!

    BTW, for those who saw my bread photo the other night, I've been noodling around with sandwich bread recipes for a few months now, looking for something new to add to our mainstays. I think I've found it in a bread that uses half whole wheat, half bread flour, a cup of bulgur, and honey or molasses. One of the most delicious loaves I've ever made and super easy. PM me if you want the recipe! I'm really thrilled with this one.

  • duckyb1
    duckyb1 Member Posts: 9,646
    edited December 2015

    DF...............horrible...........I guess I never realized how lucky I was to have the Dr.'s I had..........I would end up punching someone's lights out if I had to deal with what your dealing with.........I am a real bitch when I am nice and then someone screws with me, you would not recognize the person I become.................that superior like, don't bother me attitude makes me crazy...................and belive me I am not nice, proper, ethical, kind, or caring what and how I say it.................I am a bitch!!!!!!!!!!!!!!!!!!!

    Just dealt this morning with a mistake an online company made, and brushed me off........doesn't matter who ;it is.........screw with me, and you will pay.......big time......

    You have every right to ask all the quesitons you want until you get the result that you understand and want..............and be able to write , to send all the emails, letters, etc until you get the answers you need............screw them, and remember (the horse they rode in on).............give me her email address, I'll take care of it for you........LOL....on 2nd thought maybe you better not...........

    I hate superior assholes........

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited December 2015

    ducky, you are a Mama Bear! I saved what I had written and then went back and finished it. So, there is more awful stuff added to what I already said.

  • duckyb1
    duckyb1 Member Posts: 9,646
    edited December 2015

    Like you don't have enough on your plate right now...............friggin unbelievable........

  • duckyb1
    duckyb1 Member Posts: 9,646
    edited December 2015

    Here is an example of how angry I can get............

    I bought my grandson and his wife Waterford for Xmas....I did last year too........I had the items billed to me, but sent to my grandson's home in Chicago...now that makes perfect sense ...right...since I won't be seeing them...........

    Today UPS comes to my door and hands me 2 packages............1 I knew was coming the other said "FRAGILE" on the outside in a box that had been crushed..........apparently UPS does not know what fragile means.......but I digress.............

    I knew immediately what it was......sure enough it was the Waterford mistakenly sent to me instead of to Chicago..............like a very kind considerate understanding person for this time of the year.........I called them...........without getting into detail let me tell you.......that same person became "Godzilla after about 5 minutes of talking to several assholes on the phone............

    I asked them to send me a postage paid return label so I could send the gifts back, and reorder again and I would give them the opportunity to send it to the "right friggin address".............well the answer was "it was my fault".........4 times they said "it was my fault", and I was not getting a return postage paid label........................

    I proceeded to ask for a supervisor and after 5 more minutes the person on the phone told me that the Supervisor said "I was not getting a return label"..............after slamming the phone down, whcih has probably rendered the person on the other end "deaf", I called Corporate Headquarters of the company.

    Result.............The 2 new pieces of Waterford are going to be "resent" to the Chicago address. ......Postage paid..........and a "new postage paid" label is being sent to me so I can return the "Waterford that they sent to my house instead of Chicago where I told them to send it"..........Oh and the Xmas Waterford for my grandson..............will arrive on December 24th 2015 In time for Xmas......... and a refund as we were speaking was being put through to my Credit Card for "their mistake"....................don't mess with the DUCK...........

  • queenmomcat
    queenmomcat Member Posts: 2,020
    edited December 2015

    Ducky: singed the tips of my hair just reading that.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited December 2015

    Hi, ducky, the level of incompetence you encountered with the crystal is all too common now. I would do the same thing you did. My uncle once called me a hellcat. I took it as a compliment!

    I have to tred lightly with these doctors and their staff members right now. If I persist, they could accuse me of harassment. Getting tearful and angry in one conversation is not a big deal. Getting labeled as a crazy nut case might give the clinic grounds for refusal of treatment. After surgery, I may go to another teaching hospital for post-surgical care. And, if I do, I will send a letter to the surgical oncology department head that will scorch and burn this MO.Somebody messed with me a few months ago, and a friend said to me, "She has no idea who she is dealing with."

    I pick my battles now. One of the key rules of engagement is not to start a war that you can't win.

  • Chevyboy
    Chevyboy Member Posts: 10,258
    edited December 2015

    I don't blame you guys! These people who think that just because we have to deal with them, gives them every right to act like cyber-bitches is just beyond me! GOOD for YOU Ducky....! You too DF! And the older you get, the more entitled you will become!

    My MO, nor my PC, AND another ONCO did not even TRY to help me, or find an answer after I went deaf! I found all the information on the INTERNET, and sent them ALL the web-sites, then if THAT wasn't enough, I printed the information, and MAILED it to my Oncologist AND my PC! And then I sent the same info to the Drug Co who made Tamoxifen, just ASKING if it was possible that the drug could cause hearing loss! I sent samples in....

    I NEVER HEARD FROM ANYBODY! I finally quit the drug on my own, knowing that it CAN cause strokes..... in my brain stem, near the 8th cranial nerve.

    It is a side-effect that SOME women can have... just like Cataracts...... But none of them would listen. Talked to 3 other gals on this blog, that had the same side-effect. But the damage was done.... Permanent hearing loss.... I think I am LUCKY compared what some of you gals have had to go through.

    Decision.... if you still have to deal with the same people.... try and see how it goes.... But I would report any dink-brained idiot to the Medical Association.... maybe even see if you can send in a review on the web! But don't do it while you are still under their care.

    Me and Ducky will go after them on our Harley's! With our hair-blowing in the wind..... Damn people anyway.

    Ducky, you have to send the pieces BACK? I think I would CRUSH them, and put them loosely in a box.... I think you should post who this company was.... so we will not deal with them

  • SlowDeepBreaths
    SlowDeepBreaths Member Posts: 6,702
    edited December 2015

    DF, I have zero patience for stuff like that since my diagnosis.

    Ducky, I made this for you!!

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  • Chevyboy
    Chevyboy Member Posts: 10,258
    edited December 2015

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  • SlowDeepBreaths
    SlowDeepBreaths Member Posts: 6,702
    edited December 2015

    hahaha Chevy.

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  • duckyb1
    duckyb1 Member Posts: 9,646
    edited December 2015

    LOVE THEM................LOL.............

  • gaia0132
    gaia0132 Member Posts: 308
    edited December 2015

    Crazies

    I love you all and this place. I guess in the name of love I'll be revealing in that I am realizing my difficulty in posting, either deeply , or simply, has been really colored by a new wash of 'discomfort' for the last 2 weeks. Similar to the hip stuff I had beeen dealing with leading up to MV and the 'proposal'. I had a really excellent 4-6 weeks after that. Now 'it's back" and in my sacrum and i'm, well miserable.

    But I know it too will get better. Just in a a really challenging moment.

    I really hope each of you, who has a relationship to Xmas, gets to extract so sweetness over the next few days.

    Rain- yay for last day of RAds. Nothing but healing

    Ducky- you are badass and a bitch and I hope to be just like you when I 'grow up'. But seriously, letting go of those memories via stuff is a pain in the ass. But the important 'things' have already become a fabric of who you are. The rest is simply leaning back, with eyes closed, and trusting you will be held!

    Sula happy holidays

    Tom what are you doing for the holiday? anything? maybe I need some dragonfly medicine....

    Slow have a wonderful time with Family. It's so good that your DD 'keeps you hopping'. a pedicure sounds divine, though I don't primp too much like that, it always feels good when I have a little extra 'touch up'

    Cubbie hope the school obligations and other events leave you room to enjoy too.

    PTS are you baking for this holiday?

    DF you are dealing with a lot and that seems so crazy how they are treating you. Though it hasn't been lost on me that if the 'team' perceives us to be troublesome, they could turn. I too do not keep my mouth shut when I am having a difficult time.

    Katy how is the healing process? I continue to sense a sweet lightening about you. big hugs.

    Octo what's on the xmas menu. What did you resolve with your stepmom ( apologies if you posted and I missed)

    Chi- whirlwind trip- resting for the rest of the year?

    Oh I know there is so much more to be present for, but I'm wanting to post a least this much before it goes "poof'

    hugs and love to all you crazies



  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited December 2015

    The clinical care coordinator is stupid. She has already given me inaccurate information at least twice. However, I forgive her stupidity because she does not get personal. The surgical oncologist and the medical oncologist are women of great stature who do what they are paid to do. I am going to keep a low profile and refrain from doing anything right now. The surgical oncologist and radiation oncologist do not want me to report anything negative to that most infamous surgical oncologist that referred me to the clinic. I don't want any conflicts with them that would warrant a bad report about me either.

    Now, here is the million dollar question. If I have a low grade cancer with little chance of recurrence, why did the MO write to say she was going to prescribe AI drugs? Then, when I said I needed evaluation for dental issues and a bone density scan, why did this worm backpedal and decide I do not need the AI drugs? Oh why oh why? Why did she try to throw me under the bus?

  • Tomboy
    Tomboy Member Posts: 2,700
    edited December 2015

    I am not sure she was trying to throw you under the bus. Maybe she just took a closer look at your stats, and decided you didn't need to. I am not sure if they prescribe them to every single estrogen receptor positive woman. I do get ya with the anger towards a team who just doesn't seem that 'involved' in your case. I had similar troubles with mine , too, and I am sure they thought I was crazy. I had to learn to temper my own responses to them, and not let them get my luvmygoat's goat. Funny, cause some of the professionals I had to deal with were just that: Professional. I think some of the others it was like a game without a person or a person's feelings attached. So, when one of those kind made me seem like a madwoman in their clinic notes, then next I would go to say, the Gyno there, and they looked apprehensive when they came in the room, we did our thing, and they pumped my hand ferociously when they left the room, probably in relief that I didn't bite their head off. Fascinating to watch.

    Katydid, I am especially thinking of you, and owe you a pm. I hope the season is gentle on ya.

    Gaia, hi. Just hi!

    And Sula, and Poppy, and queenmomcat, and Chisandy, and and and and.... I couldn't have come this far with out you....

  • SlowDeepBreaths
    SlowDeepBreaths Member Posts: 6,702
    edited December 2015

    This story is for Tomboy because I just want to make her laugh today, and I know she will appreciate my determination!!

    Since I've been little, I've always wanted a train around my tree. I'm not sure why I was always fascinated by trains, but it was something that I wished for EVERY year. Apparently Santa never thought I was a good enough to warrant a train set. Once I became an adult, I could never justify spending the money each year. There were always more important things to buy. A train set has been on my mental bucket list. I keep a mental bucket list because I've always felt if I wrote it down, I'd be tempting fate.

    This year I finally got a train set!! I applied for an Amazon credit card and they gave me an $80 credit and my DH donated $50 of his gift card money to the cause. I was so excited when it arrived. My DH set it up on the table to make sure everything worked. It all went together nicely and the first time around the track I was overjoyed. He promised he would help me put it under the tree when the weekend arrived.

    Being the organized (my DH calls it impatient) person I am, I decided I could do it alone while he was at work. hahahahaha.....SILLY ME!! My wrists don't work like a normal person. They bend up, but not down. Range of motion is also limited in my knees which means I can't squat. My back does ALL of the work when I bend over to pick something up. I carried all the train parts and put them all under the tree. I knew once I got down on the floor, I wouldn't be able to get up and down for the things I forgot, so I tried to think of everything I would need for the assembly. It's been a VERY long time since I've done anything on the floor. I positioned myself on the couch and slowly let myself down until I landed very hard on my 3/4 butt cheek. I had to scoot myself over with my less than perfect wrists. Once there I had to roll on my side to assemble everything. I spent a good portion of my time ROLLING on the floor because that's the only way I can get to things without putting too much stress on my wrists. It took me HOURS!! Finally I was all finished and ready to get back up. I COULDN'T get up!!! I rolled over to the couch and tried to get up there - didn't happen. I rolled over to the stairs and thought maybe I could scoot myself up on a step and get up from there - didn't happen. So I just sat there with my back against the wall for 1-1/2 hours. Too weak to get myself back up off the floor!! After resting for that period of time, I was finally able to roll over to the chair and table. I'm not sure how I got up off the floor, but I was sure relieved once I was on my feet. I learned a valuable lesson in patience that day. Whether that lesson will stick remains to be seen. I try not to picture how ridiculous I looked rolling around on the floor and thank goodness no one could see me!! Did I mention how much I LOVE my new train set????? I sure hope my imagined Grandchildren will love it as much as I do when they finally get here.

  • Jackbirdie
    Jackbirdie Member Posts: 1,617
    edited December 2015

    Beppy.....ahem..... Great story. Made me laugh too, except I feel bad you were trapped on your ass all that time on the floor..

    But where are the pics of the train! Must see!


  • SlowDeepBreaths
    SlowDeepBreaths Member Posts: 6,702
    edited December 2015

    I will post some tonight. I've been waiting for a limber family member to take a pic. hahahaha.....my DD said she would do it tonight. She also said she will make a video so I can post it on YouTube once I establish an account.