Im bitchy, I moan, I groan.....anyway.
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That is great news Jane!
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JANE - THAT IS WONDERFUL NEWS!!!!! GOOD JOB.
Dream - I don't live in Orlando, I live in Tampa - where's the party and when? Hopefully it is in November, the weather is beautiful then, I would invite you to stay with us, but it is quite tight and I have five cats - a chemo brain decision = yes, I lost my mind. However, I'd love to meet you and take you to my favorite bars - on the beach and on the Bay - on the boat. It really is pretty, just hope the Bermuda High and El Nino hold our weather pattern until December - NO HURRICANES! If I had moved here in 2004, I would have packed up and left!
LOVEMY - Welcome to the group! If you have any advice, we'd love to hear it. I find that people are reluctant to hear about chemo brain, they don't really see the mental deficits I see and feel. I reacted manically to stress at work and I work for the master ADD guy - even normally our whole department is stressed - if I can get back there, then I know I'm okay. Right now? I do a whole lot of nothing. Quite weird, but it pays well. I do feel somewhat clearer since the new med, fish oil, Lecithin, baby aspirin and immunity yogurt, so something must be working.
Isabella - you have no idea how good my onc was at avoiding all questions. When I did a little research in the past month, I found they have seminars to teach them how to avoid answering questions while still pretending to care! It blew my mind. My husband would come along to my appointments - his nickname is Mr. Switzerland, very affable - there were times you could see them cringing, because he wanted to "get it straight" in his mind. Even he would walk out shaking his head.
Ladies have a wonderful night - I went back to work today after having two weeks off to recover from nipple surgery! It felt like a kid getting ready for the first day of school!
Love all,
K
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Its in Clearwater which I think is near Tampa. I love cats. Have 2 of my own. However, cannot sleep on floor (LOL).
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kmccraw423 - thank you.
Show and tell, show and tell. I'm bitchy, I moan, I groan, and I'm itchy ... anyway.
Oooh! Ooooh! How did you spend last weekend? I went into the hospital with shortness of breath (secondary condition) and first condition that I had sprayed a spider high up on the side of my house with RAID spray and some of it fell on me. Bad rash - bad rash! I should have used a broom...
And..... (drum roll to THAT SUXS) The hospital ER kept me for a pulmonary embolism. TA DAAAA! Taxotare takes out your hair, might leave a PE in there, oh dear, oh dear, oh I declare - what an adventure, I wouldn't have taken it on a dare.
My (now former) Pulmonologist was willing to let my treatment go until my next CT scan or if I had any problems, and I didn't like that, but I didn't know what to do. I wanted to know what the fuzzy stuff at the bottom of my lungs is on the last CT, even though the upper part of my chest area cleared out.
I can now barely tell the difference between heartburn, chest pain, and shortness of breath.
However, tell this true story to your children ladies... Silly sessna1 sprayed a spider with RAID, got a terrible rash and after four days to the local ER she fled. She was also having some slight trouble breathing, the ER doc stethoscoped her and heard her wheezin'. The ER doc did the test for PE, the numbers came back off the charts you see. From that she did an ultrasound, and there, confirmed was the PE found. So use a broom to kill high hanging spiders, and say a kind prayer for sessna1 and the PE inside her.
-sessna1
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Hello Ladies. It has been a while since I posted. I have been tired. It is hard every year to get back to work after summer vaca, but this year is esp hard. This is my first year after DX and I had surgery. I have been going to bed early everynight.
Lots to cathc up on. I even took notes on the other posts, but can't translate them now. I really liked living in Fl and yes K, there are alot of great bars and places to just hang out at!! Clearwater is near near Tampa Dream and Orlando is not far.
Jane----GREAT NEWS NED~!!!!!!!!!!!
Are the markers metal are are they like a stain steel? I ask because, of being BRCA2+ I will have to have MRI's w/mammo.
Yes this is my support group. I did not have to have chemo, but I still get into a brain fog that others do not understand. I even made a joke about Tamoxibrain and got blank stares.
Have a great day!!!!!!
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Geez Sessna -- I thought it was only supposed to rain if you kill a spider!! What a horrible weekend!
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Good morning. Sessna - leave the spiders alone - just stay away from them. They give me the heebie geebies. I, unfortunately, would have done what you did - used Raid because I would be afraid if I tried the broom the spider would jump on the broom and run down the handle toward me! I always say live and let live just don't come in my house or you die!
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I have come to an understanding with the spiders in my house. As long as they stay out of sight, they are welcome to live inside the walls and attic and munch on any other buglike things they can find and catch. I won't chase them down with chemicals. But as soon as they show themselves inside the living area of my house they become fair game, and will be squished if the dog doesn't eat them first!
Sessna, know you hated staying in the hospital, but at least they recognized and treated the PE, and now hopefully you're breathing easier.
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Oh geez Kathleen -- you just gave me the shivers!!!!
I had a spider hanging around for a while -- left him alone and named him Sparky. Then there was Cecil the Centipede (cat ate him), Cyrus the Centipede (he was huge and just went around and around a ceiling light fixture)...then Stupid Spider that hid in the cats' litter box (ooooh, they won't find me in here....). I think I'll stop now, before you think I'm totally nuts!!
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Good morning everyone. I can't remember everyone's posts, but congrats for NED and sorry for hospital stays. As far as spiders go, keep away from me. moth balls will keep them away if you put on outside window sills. But if you have pets, not a good idea. Flies and mosquitoes do not like mint gum - unwrapped, but not chewed... lol.
I remember having a nest of ground bees one year. Nothing worked to get rid of them until I was cleaning the oven one day with that spray foam cleaner... I sprayed the nest and no more bees ever.
I have 2 titanium markers, one from the lump and one from the stereo biopsy. Neither rang the airport alarm when I flew a couple of weeks ago. They show on mammo and mri, but they are not magnetic, so I am told. and no problem for any scans.
I think that covers the recent posts. Hugs and Blessing for all, Nancy
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I almost forgot that I get to read my CT scans until someone asked about results. I was a bit DUH over the last week with a UTI. Then I hurt my arm swimming, and the drugs kept up the DUH. So now I am clear-headed and only in a little pain.
Back to the CT scan, Im no doc but..... it appears that the tumor leaning against my ureter is "almost resolved" . I like that sentence.... it sounds real positive. A little progression of spinal mets but one may be improving. Liver met shrank a little. Sounds positive to me..... but Im not a doc.
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Good golly! I leave you girls alone for a few days & look at the trouble you get into!!
Gentle hugs to all. Dream, I hope the docs agree with your version of things. Sessna!! Spiders are supposed to be good luck in a home -- they eat the other bugs!!
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Thank you for all condolence posts. Congratulations on NED to Jane M! Yes!
...Now, the rest of the story.
They would not give me Benadryl in the IV once I had been admitted to a hospital room. It was hours between ER and getting into a room and I was given no IV Benadryl once it was determined that I was to be admitted to a room. I was in itchy purgatory.
On the ward, I overheard a conversation between nurses about 'No supervisor on the floor for this shift... no one wants to leave of the nurse staff and go home ... if we get a lot of patients there will be trouble.' I was miserable and in distress. I read the "Patient's Bill of Rights" posted on the wall. It was like it was mocking me. I had put in a call for my nurse and she was no where after 20 minutes of waiting. I stuck my head out in the hall and the aide said, 'Your nurse is in the room. I will call her for you." What room? Whose room? Not my room.
So, I got dressed. Cried. Gathered my positions, and walked out of my room ... WAIT WAIT there's a punch line later...
They asked me where I was going and I said, "To get help." They told me I would have to sign myself out, I said, "Get the form." Another nurse was called and she offered to listen to me and address the problems. I looked at her. My mind said, "YOU cannot get my IV Benadryl, and I'm gonna get it even if I have to walk down to the ER again and get it."
That's what I did.
I signed myself out of bed 0618, walked down to the ER, waited five (5) hours, got re-admittted, got my Benadryl IV, and sent right back up to bed.... WAIT WAIT... 0618.
Yes, sent right back to the same room I had abandoned for poor quality of care. Later that night, a different nurse said he would call the doctor for me and disappeared for a little over and hour before he came back with nothing for my pain. I asked the a.m. doctor for a cream or something and she said, "You'd just apply it all over yourself."
I thought, "You want me to follow your orders like a child and you won't let me use my discretion on the use of one tube of cortisone cream like an adult would?" "May you never be in the misery that I am as an oncology patient right now, doctor."
Therefore. I wish to be noted as one patient who walked away from poor care on the 6th floor, went back down to the ER, rechecked herself in, and was admitted right back to the 6th floor, the same room.
This is a true adventure. I lived it, and I hope for better for y'all.
sessna1
KAK-Spider was outside house. Big enough to see from a distance. Didn't want my gardener to run into it or its web IF it left if out there for the day.
Saw spider rappel down from a door jamb once and I can almost swear it was talking on it's own cell phone. It was that big... ewwww.
I had an awful big roach come in on a piece of furniture from a plant stand once - I got it at an "antique store." I looked at my sofa, and it was sitting there as if I should bring it tea or coffee. I chased it, cornered it, got a glass jar over it, named it Hal, and didn't dispose of it until it died.
Did you get the allusion to the Hollywood Producer of "Lil' Rascals?" I knew you did. wink wink.
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Yay, Sessna....you go girl.
Sounds just like what we have to put up with in my hospital....well, maybe not quite as bad !!! But...getting that way.
I had to go in for a full anaesthetic to have one of my drains out, it had been in 18 weeks I think, ( could have been 19, without checking my notes ), and it had grown in. No-one could pull it out, well, it was a case of after the first couple of yanks I threatened them with blue murder if they did that to me again ! I had my op. at 12 pm, took about 10 mins, and at 9.30pm I was still sat waiting for Dr to 'come sign me out'. So, I hopped off the bed called at the nurses station to say I was leaving there and then, and walked. I pulled the iv needles out in the car...I WAS MAD.
DH was reluctant to drive me, I think he thought they'd be coming chasing after me !! Nothing was ever said to me.
I also made a complete ass of myself just after dx. Second visit was a meeting with 3 dr's and my bc nurse to discuss treatment plan, and only 1 Dr showed. I had a sheaf of questions, and nobody bothered to be there. I went into the 'meeting', and wouldn't say 1 word to the lady Dr. In fact I pointedly turned my chair round showing her my back and ignored her. I really got it from DH, he was ashamed of my behavior, and me?? I just do not know what came over me. Probably so upset at the diagnosis, loads of questions being left unanswered for me, and total disbelief that the Dr's hadn't cared enough to be there....just a quick 'we're sorry' would have done it. It was just SO out of character for me, I have a thing about good manners would you believe?
3 weeks later I made a point of going to see the Dr I had ignored and telling her how ashamed I was of myself. Took some doing !
Sometimes these medical procedures and the way we are treated need ironing out. I won't stand any s**t from anyone at the best of times, so am always on the look out for someone trying to do me and mine down. My kids and g/kids all ring me up if they want any help with anything not right. I even have girlfriends of g/sons now ringing me for help...AND bringing me their mini skirts to shorten into pelmets for them (don't know what that had to do with the main subject!!)
Isabella.
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Wow, Sessna1 that was quite an adventure. Sounds about right though. I'd never heard that spiders were lucky -- only that sometime during our lives we swallow one when sleeping. So, now you have an PE? Geez. So how was Room 0618? Did you have a roomie? Don't blame the nurse, it is the doctor! They can't do anything without an order. I was lucky enough to have a nurse, Bobsie (English) and she went beyond the norm to get me help. Probably saved my life! I read an article today regarding hospital infection is the leading cause of hospital deaths - really!?!
Dream - Clearwater/Tampa and St. Pete make up Tampa Bay - and if anyone from St. Pete is on this stream - please forgive me. When will you be here? Anyone who came up with the brainfrog is due a dinner and a drink on me! Try Spirit Airlines if you live in the Northeast - they have sales all the time and right now, tourism is way down. I know a great little motel on St. Pete Beach - we got a room there for less than $50/night! Please let me know the particulars.
Isabella - I don't think you should have apologized - they said they were going to be there and they weren't. I went in with questions and no one ever answered them, they skirted almost everything. I did learn all about cancer, just not how the drugs to treat it would affect everything in my life.
I wish everyone a good night's sleep.
K
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Way to go Kajan.... I'll take the cheap motel over the luxury condo...., long as I can get the scooter in the door. Not leaving her outside by herself in a strange city..... lol. Nov 13-18 are dates I was given.
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Dear Isabella4, and my beloved president wants "acceptable" universal health care? What a dream. No country in the world without independently, population controlled, wealthy citizens can have that.
I was going to get my Benadryl if I had to start screaming, "There's a rat in this room! Aaaaaah! Help! What kind of facility am I in?" I was not going to let nurses call me "sweetie," "honey," "darling" like a child and think it could soothe me into lying there in pain. Not this oncology patient, not when I wasn't hooked up to that IV...
Your drain had grown in. Your... drain... had... grown in. I'm getting light headed here. No one told me that a drain, port a cath or port a picc could grow in... Ladies - can all three of these ‘grow in?' They tried yanking it out... pain. Required admitting and a procedure. They had to put you under anesthetic to remove it; you were there from high noon to 9:30 at night waiting to be discharged after a 10-minute procedure. You pulled out your own IV needles.
My good lady, I considered pulling out my IV needle once in another ER admittance adventure and talked myself out of it. Now, on Coumadin for the pulmonary embolism, the best I can do is walk from any floor of the hospital back down to the ER. Wait. I did that once. The best I can do is to do it again if need be. (smile, please)
Nothing was ever said to you. No quality of care followed up. No one blanched at the chart where no nurse had signed off for removing your IV. My Lord and Savior. Oh oh oh.
How DARE only only doctor show for your consultation? I would have been livid, too!
You know what happened to our good manners? They have been taken for granted by too many health care professionals and not professionals and we are in survival mode. Ask any animal backed into a corner, bite, flight, or fight. You have to choose. We're normal. Trust me. If we don't stay above normal, we won't stay alive to fight this. I'm proud of you for woman'ing-up and apologizing. See? The manners are in there. Trust me, I'm not a doctor. (Laughter from the house, please.)
What's a pelmet when it's not on a curtain? Is that like a Madonna (rock-star) skirt circa 1980's or something? Kind of ballet, tutu like? Oh, they are gonna be running around nude before we can stop them. Once they have pierced and tattooed everything, they are gonna take it off... mark my words.
I am proud of you for being a family advocate - it's the only way to keep those alive that same way: alive.
I do have a PE, confirmed and affirmed. Room 0618 was a private room. The nurses even tried to sell me on that to get me not to walk out. (Yeah, having a roomie that moans, or has a plethora of visitors does SUX. Oh, and one TV and a roomie is awful, even with individual volume speakers per bed.) I had a DVD player, and a nice volunteer with DVDs, blankets, and hats. I was on the oncology floor.
I'm not sure who is to blame when you ask for assistance/medication and are either ignored or left to simmer in your own juices until you pass out or fall asleep. To be honest, I also thought that re-cycling myself through the ER would get me re-assigned to some fresh physician(s) new on their shift. There was method to any madness that can be proven on my part.
kjan75, Blessings upon nurse Bobsie. Blessings upon good, hard working nurses. Hospital infection? H1N1 flu (Swine flu, kill the hogs and pigs, pork doesn't have to be a choice for the other white meat) on the horizon and a hospital infection can take a patient out?
Isabella apologized to the onco who did show up. I am proud of Isabella. It's the other oncos that should have appropriately been dressed down and ordered to apologize to Isabella and the onco who showed up. What if the situation was reversed and someone did that to them?
Uh-uh. No. That poor nurse trying to head off a crazed patient looked me in the eye and said she would listen to my complaints and problems. I gave her the same look I gave a therapist in the 2nd grade after a teacher had yelled at me in front of the class (for something I didn't do), I
was humiliated, urinated on myself, and it traumatized me for approximately the next 3 decades - at which time I stood up for myself against an in-house corporate supervisor/bully. I gave that nurse my look that said, "You are doing your job. I know exactly what is wrong, and you can't help me." I was silent to the therapist, but I told that nurse, "No." I was mature as a child, I'm darn sure mature-er now.
I'm closer to death than to birth now. I load my strength-ammunition every morning and pray. So, do you feel lucky, huh? Do you feel lucky enough to cross a chemo patient? I'm ready to bite your head off like the prey of a praying mantis if you won't let me by to get my medical care. The praying mantis prays over its prey as it eats it.
I am a nice person. Let's keep it that way.
‘...you've got to ask yourself one question: Do I feel lucky? Well, do ya, punk?' The movie, Dirty Harry 1971
-sessna1
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WOW!!!! I sit in a DUH!!!! face. I am very grateful, all my BC doctors have been great. I have been very "lucky" in the that aspect. The Women's Imaging Center that did the biopsy was on the same site as my BS, they even recommened her. When I first made the appt I was upset it was so far out. I was DX on Dec 4, my consultation was scheduled on the 21. However, I got a phone call from the nurse navigator and had my appt changed to Dec 8. My surgery was scheduled one month later. However in between the nurse navigator scheduled appt w/ rads and med onc, nutritionist and prep op physical.. Even now almost a year later I am still grateful. All my dr. have been wonderful.
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OOps, I am sorry, it kind of sounds like I am "bragging". I am just surprised that people chose the medical profession, esp working with cnacer pt and can be sso uncaring.
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quick b*tch to vent...sorry - nothing to do w/bc but my bp is rising...we are absolutely slammed at work, we can't keep up with the load...even working overtime. Today we HAVE to take time to attend a 2 hour meeting where people are coming in to show us ways we can "exercise at our desks" ARE YOU FN KIDDING ME? Here's how I excercise at my desk you schmuck...picture me poking people in they eye and kicking them in the shin for their stupid ideas!!!!
Why do managers....no matter where you work...come up with the dumbest ideas at the worst possible time! And to make it worse..."we were encouraged" to attend, so of course no one accepted the meeting request -which didn't go over well- and now it's mandatory. Ugh...on the plus side, for once in a very long time I'm not aggrivated with someone having anything to do with the medical field
Have a great day ladies...I'll check in later if I'm not to wiped from my chair exercises!
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I have to admit that I do get stellar care. There was only once where I was left in pain and my friend went toe to toe with the nurse - "Does she have orders for morphine?" Yes . "When did she have it last? Noon. When can she have it next - Well every two hours. So..... I'll get her a shot. And a breathing treatment, and oxygen, and those lovely heated blankets. No one ever left me in pain alone again. I just cannot speak up for myself in a Janey gown.
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NavyGirl - I'm laughing out loud - I feel your pain!!!! Meeting about meetings even! Thanks for the laugh.
Dreamwriter/Mary - NOT FAIR! Two of the three were "caring" but the onc - while pretending to care, really is in it for the money - I wonder what type of payoff his corporation gets in return. My onc surgeon cared, however, he is blaming the plastic guy for the infection and the plastic guy is blaming him for the skin failing because it was too thin - I blame the hospital! And, none of them gave me sufficient pain meds - enter Nurse Bobsie - get Pain Specialist! Unreal, they sent me home after bilateral mastectomies with flippin' aspirin! I was told I be back to work in two weeks. They lie, they lie, they lie! Be grateful for your good fortune and caring docs. I'm very jealous!!!
Dreamwriter - November is gorgeous here - I'd love to tag along at least one night/day. I will get the motel info for you and your scooter will be able to navigate around the pool very nicely too! You'd be on the inlet side, across the street from the beach. Let me check their rates and I'll get back to you. There is a free Trolley that runs the length of the beach and umpteen bars and restaurants - cheap Cuban sandwiches and everything! You will have a good time. I am hoping you will let me use your "Brain Frog" in the 3-day walk coming up to educate people on chemo brain. While we all thought it was hilarious, my co-workers thought is was silly - they don't understand. I think we could educate a number of people at the walk.
Gotta go!
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Oh great, now I have a vision of a spider rappeling down into my mouth and swallowing it! I remember a nature show mentioning that we are always within 3 yards of a spider...
When my boyfriend was in the hospital for a heart attack (one of the 3 times) he was so fed up he detatched himself from the monitors and IV, and left. Seemed like no one noticed that he "flat lined" or saw him leaving...
Edited to add: the cops and an ambulance did show up at his home a few hours later -- he refused to return to the hospital. He should have checked out formally -- what a waste of ambulance and cop time -- they could have been needed elsewhere. Stubborn man!
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I need some good news. Every single phone call the past few days has been a problem or complaint. One said I am rude to change the subject when they ask How are you. I say fine, how are you, hope you enjoyed your weekend, or the beach or similar... is that rude? Another is being sued because they stopped payment on a check for home repair that was horrible and needed to be totally redone. One's sister died, another's 18 yr neice killed in car wreck. I know there is sad and misery, but someone PLEASE tell me something good. And tomorrow I go for my first post tx onco visit. $ 40 co pay for what, I wonder? And I am still paying off what insurance would not cover for first chemo tx last June. Rant, rave, bitch, moan... Ok, I am done for now. Hugs, Nancy
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Okay, leftyAKAnancy. Just for you.
I have had good news guilt for one week now.
On Friday, August 14, 2009, my onco said that since my last CT scan was without tumors and they had completed the internal/external ultrasound of my pelvic area for my enlarged ovary, that I am No Disease. I looked at her. I said, 'I am familiar with the phrase No Evidence of Disease, but what is No Disease?' She said, "Same thing. One more cycle of TCH, and then you will go on Herceptin only for 6 months and we will monitor you."
I expected Ashton Kutcher to come through the door and say, "This is a cruel PUNK on a breast cancer patient! Don't believe anything they tell you! It's always something..."
But he did not.
He did not.
Y'all know that I will not and do not hide that I am of the Christian faith and a Christian. I am praising and thanking God for creating and administering the procedures to prolong my life. I don't feel like a "survivor," but a person who is still on her life's adventure.
I didn't want to lose ... hmmm... I didn't want to lose sister-standing in your eyes. I am fully able to get tumors again. I now have to have my pulmonary embolism and my tumors monitored well and regularly for 6 months while taking our dangerous drugs (doctors orders) for both of them.
Did y'all know that cancer drugs were developed as the direct result of drugs manufactured for biological warfare? Agent Orange, etc - killer chemicals with some "positive effects."
May I have a group hug? I'm NOT strong enough to lose you or leave. I'm still under treatment.
your sessna1
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Sessna, you STILL get to stay with us NED! You don't get away that easy! But HUGZ anyway.
Nancy, here's some good news. You still have a computer and internet connection to keep you connected with the last group of sane women in the world!
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Nancy I have good news to share!!!!!!!!
#1. I do not have to go back to work until Aug 31. and even then it is just get to know the students and their behaviors and start planning on who to group together in work groups, the fun part of the year!
#2My sister and Aunt are cming from Cali.They dropped my nephew off at MSU, in Lansing MI and since they were so close they are coming to PA to see me. It has been 8 yrs.
#3, My house is clean and the kids helped.!!!!!
Now for the rest of the story, Nancy you can skip this. Sister just called they had a tire blow out in OHIO and are in Sandusky getting two new tires. It was the front drivers tire. The car only has 35000 miles on it and the tire dealer could not believe it. They are lucky b/c they were on the interstate going 80mph and could have flipped and had a serious accident. But they had three angels, my mom, dad and uncle holding the car steady.
(((((HUGS))))))) Nancy!!!!
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Wow Mary22 did you have to beat the children or was it voluntary.... LOL.
Im feeling better.... thank goodness for antibiotics.
Getting in some exercise but also seeing my limit with ability to walk restricted to within a block. Struggled to get home... but Im ornery that way... I pushed through the pain and discomfort and made it to the door. But walking may not be in the cards for me as much.... hmmmmmm.
I guess I should check in with my bosses... they owe me a lunch... hahahahah.
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They were excited about seeing their aunt and grandma Nell. That is what they call my aunt. Motivation. But if need be a little beating never hurts!!!!!LOL
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This should probably go on the mojo thread but.... (skip if this would be offensive)
I found out last night that my left hip doesn't flex like it used to. I didn't say anything, but what do I do about it?
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