Im bitchy, I moan, I groan.....anyway.
Comments
-
Wish,
Thanks! I just wish I knew what to say to this idiot to get him to see that Tamoxifen is causing problems... if it causes these stupid polyps to grow, I don't want to just sit and wait til they come back! I am NOT going through this again!
Hello to everyone and a big THAT SUCKS to anyone who needs it!
Harley
0 -
Well, for starters, you could get a neck hold on him and he might pay attention!
Seriously, tell him JUST like you did us. Say, look MF'er, this is wazup! I know it's hard, b/c we're all afraid of the docs abandoning us, or thinking we are nutty fruit cakes, but you know what? We are nutty! Nutty from sitting home, or at work, worrying and waiting for test results that are sitting on their desk, till they 'get around' to calling us. I can say, that MY BS was excellent in NOT making me wait! He called after rounds of pts at the hospital on a friday night and when I talked to his nurse earlier in the day, she said IF it was too late to call FRIDAY night, he would call saturday. She said HE NEVER leaves anyone hanging all weekend. Same thing with the MRI bx,....Had in wednesday late afternoon, in another town, she emailed him the results Thursday night and friday at 7:55 am, he was calling me to say the 2nd lump was cancer too, and that we couldn't do the lump. The man was so compasionate. Even his wife sent him with a printout on information for me (or us) one day. Just a really good guy, whose wife must be fantastic too, b/c she can't see him too often with the hours he spends there, in the hospital and on the phone at night.Anyway...I digress...what I want to say is this. Take charge. NO one else is going to for you! Maybe you need Shirley to GO in there with you. Only for moral support so you can find that backbone you know is there and use it! I know with someone with me, I'm much more apt to ask those for those requests that the doc doesn't want to deal with. Then again, A LOT depends on the doc, and let's face it, yours is our resident idiot!
Hang in there girl and let us know how it goes!LuAnn, are you doing just wigs, or hats/scarves and so on also?
0 -
Hi Ya'll! Happy to hear others are as happy as me about our new life. It's one of a kind. Has so many roads not sure which one to try. The dr's aren't much help. So if we can lol we are ahead of the game. Everyone needs to let their hair down LOL! ( that's if we had any!!!!!!!!!!!!!! lol. Femara is my poison.
Let's pray for for IT'S SUCKS!!!!!!!!!!!!!!!!!!! ya'll have a nice day. always0 -
I think we should do wigs/hats/scarfs. Then those talented people that want to make hats we can post those also. Should be a huge help to others.
0 -
Hi everyone! I'm bad. I haven't caught up with all the posts...so many pages.
Traci, I did see where you had to put your precious kitty down. Geez, I hated to hear that. I'm so sorry.
LuAnn, I hope you're feeling better. Since I have't read all the posts, has your doc or nurse gotten back with you. It absolutely infuriates me that someone could be so darned mean and insensitive to anyone in pain. I'd like to slap that nurse!
Harley, I'll call you in a few minutes. Looking foward to tomorrow.
I haven't posted here since my friend die (I think). Anyway, yesterday was her memorial service. My brother said it was real nice. She had about 15 or 20 people there which was great. No drunks. My brother said her mom cried and cried. All the family was great. They met their 5 year old grandson for the first time. And, my friend's mom as asked my brother to come visit them. They live about two hours away. Anyway, it would be so great for those children to be able to get to know their grandparents, aunts and cousins.
I'll try to get caught up on the posts. I have been bad. I've been politicking. LOL
Shirley
0 -
Ah yes. One of my favorite pictures. A big that stinks and that sux to all who need one today.
Harley: Gyne appoint sucks but having lunch with Shirley makes me jealous.
Wish: I loved your post and advice to Harley. Made me giggle.
LuAnn: Im so relieved your home and recovering from the surgery. I hoping that lump your feeling with reabsorb similar to a hematoma. Did they say anything to you. I was thinking maybe you should call and ask if a heating pad will help. Anyways you win the award for the suckiest weekend.
Marsha: I so agree. Laughter keeps us sane. Sucks you have to be on Femara but hoping its doing its job.
Shirley: Good to see you again lol.
Saint: Hope your having a good day today because yesterday sucked.
OK - its dinner time. I am already feeling board withdrawal. Going back to work tomorrow. Yep - back to the real world for me! Rushing here and rushing there. Its gonna be dark out when I leave the house now. Anyways - I will be stopping by in a frenzy marking my spot lol.
OH and one more thing. I didnt have a wig, and my hats are ummmm not wearable anymore. Even before bc I was a hat person and Im always looking at hats. Usually find this or that and then think it would be perfect for someone getting chemo. So when I see something special, Ill pick it up and send it to LuAnn? I think its a wonderful idea and would like to be part of it. This idea - doesnt suck
Nicki
0 -
Lovin' that dump truck, Nicki!
My son has enjoyed his 15th so far - without his sperm donor. "Daddy" Dearest called last night to say he could come today (when we were busy - sorry!), but had to work tomorrow (mind you, he is collecting disability and supposedly unable to work) and would "try" to touch base with my son on Tuesday (don't we feel honored by your attempt at being fatherly!). I wonder, do birthdays sneak up on people in his reality? Nothing quite like a birthday celebration two days after your actual birthday.
We went to dinner and my son is now out with his best buddy having ice cream with her family. Sperm donor called while we were in church
to sing happy birthday. Least he could say he tried, I guess. Harley, hope all goes well at the doc's tomorrow. Lunch with Shirley might be the best part of the day, though!
LuAnn, glad you are recovering from your surgery. Hoping the rest of your recovery goes smoothly and you are pain free again. The wig/scarf/hat recycling venture needs you...
Howdy and "That Sucks!" to all who need it - especially you, Marsha, Marsha, Marsha! (always wanted to say that, lol)...
0 -
Hey WhaSux?
I love this thread! Just have a minute, but wanted to suggest a way to deal with SUCKY medical personnel: Remember that they put their pants on one leg at a time just like the rest of us (tho we may be too sick to dress ourselves!) & that their trips to the latrine STINK too! When all else fails you should address them by their FIRST name! I mean, come on---everyone in the office probably calls you by your first name! Anyway, it works! Like the time I said, "Come on Walter, you're not listening to me!" Believe me---if you practice in the mirror first you CAN do it & once you get their attention it will be easier for you next time! (What could they accuse you of?? Knowing their name & using it?)
Hope the IOS's are on the decline for EVERYONE here cuz we've had enough, collectively!
Be well & stay strong!
0 -
You know, you might have a good point there! What would happen if every BC pt strating calling their onco's, BS's and all by their first names. Hm...William, I really need to get straight you what..... OR Billy...Look here....
Could be fun if you knew their middles names too. I think many of us are older than they are! We might even get them to straighten up their posture! 0 -
Evening Ladies,
Well I have my IOS for the day. I posted a question on the Johns Hopkins web site (I actually got through to post one - soo hard to do). I guess I wanted to hear more detail than a one line answer. The web site does so much good that I was hoping for more than what I got. I'll post it here and maybe you wonderful ladies will give me your advice (or a kick in the pants for wanting a better answer! lol). Post was:
I have a question regarding two lymph nodes that were taken during my mast for dcis where 8mm idc was found. The terminology states "There is a spindle cell proliferation with prominent vascular channels present in one of three blue stained sentinel lymph nodes. There findings are consistent with a benign vascular transformation of lymph node sinuses. These findings are also present focally in one of the two non-stained lymph nodes. However, simular morphologic features can be observed within Karposi''s sarcoma involving a lymph node." I was tested for HIV and it was negative. Should I worry about the abnormality of these 2 lymph nodes? I had my mast in June of 2007, and am still concerned about this. What is your opinion regarding this? I must also relay information on my mri report prior to surgery. It states "There is a 2cm axillary lymph node without a fatty hilum which is nonspecific but suspicious for possible metastatis." I do not know if they are referencing the same lymph node but it also concerns me. Thank you for all your help and for all you do for B/C.
The response was:
given that more than a year has passed and you apparently are doing well sounds like whatever it is isn't a life threatening situation or you would know it by now.
I guess I was hoping for a more indepth response as to why the lymph nodes were the way they were. I don't know if I'm doing well as I only see my onc only every 6 months. I know it's not an IOS as serious as most of you wonderful ladies, but it just BUGS me!!
That Sucks to all and have a good evening.
Gentle Hugs,
Trish
0 -
Trish, have you ever asked your BS or your Onocologists to explain the verbage? I too would be concerned. Have you done any reading online to see what the types of cells mean? Sorry I can't be of help, but no, that one sentence answer wouldn't have sufficed for me either.
Please, let us know what you find out, it's interesting you hadn't heard from your docs about the information. Did you ask anyone on your case?
0 -
Wish,
I did ask my onc - basically she ran an HIV test and sorta blew it off since the result was negative (no sh*t). I didn't know the procedure to send it off for a second opinion, or I would have. I guess I was afraid if I asked the insurance co. they would charge me for it. I guess I'll ask my onc more in detail in October/November whenever my next appt. is. The only thing I can find online is for men with HIV/and the cancer that is mainly associated with the virus. That wouldn't be me! My husband and I have been together for over 22 years. (Gawd that makes me feel old!) Maybe I can convince my onc (insurance willing) to have another pathologist at the same lab check it out. Thanks for listening to my whine (anyone have cheese?)
Hugs to all,
Trish
0 -
Wow, just read a little about the Karposi's sarcoma. Oh my, yes, I'd be pushing for answers tomorrow! Most definitely I woulnd't be waiting till next month even! I can't believe she didn't give you a straight answer! Let us know what you find out!
0 -
Can we all just borrow the WhaSux line? I love it! And I also love the idea of calling the docs by their first names - that is hysterical and, yes, would get their attention. Especially the ones younger than you.
Harley - Hope your appointment goes better than you hope for tomorrow. And say hi to Shirley!
Shirley - Harley's gonna tell you hi from me!
LuAnn - Glad you're getting better. Oh, MAYBE I SHOULD TYPE IN ALL CAPS - GLAD YOU'RE FEELING BETTER.
Felicia - I think we all know now why you divorced him. Dh's ex called the other day and she never does anymore - made me really nervous because every time she calls it's about money. She did want something, though, but only a letter...whew. Glad your son had a good birthday.
Wish - Whatever happened with your ins. and dh's work? Is that resolved or something like it? Hope so.
Nicki - Sorry it's back to work. Hope you're able to ease into the day.
Other than still getting over my early and often neuropathy symptoms, I have nothing much sucky to report. I do know which shoes I should not wear until next summer. And they are not crocs. A super size THAT SUCKS to anyone I missed or that needs an extra!!
0 -
I just found this from DebC
50 minutes ago AlaskaDeb wrote:
One step forward, 3 steps back
I'm home from the hospital. The surgery went fine, more later on that. The bad thing is it has affected my eyes again. Seeing double and pupils not reacting correctly. Not sure if it it from the drugs or trauma and swelling from surgery. Thank you all for the prayers. I will try and update soon as vision and typing skill allows. Please spread the word as I don't have the energy to post on all the boards.
0 -
Oh Geesh! Prayers for DEB! What a suckie disease this is. One step forward, 3 back.....It's just not freaking fair! THAT takes the SUCKAGE CAKE! DAng it all!
Thanks for asking Christine, we think it's resolved, as it's (the ins) is back on-line and paying now. Only thing is, the boss made some comments I'm not comfortable about and wondering how long it will be till he shuts it down for good. Obviously this is why the man isn't married, he's no compassion for anyone. Strange thing is...His mother had breast cancer too, I'm almost possible, if not, another serious illness, just a couple years ago, so unless his heads in the sand, he's surely not playing with a full deck here. How could someone play with others lives like this, you know? But...Karma...what goes around, comes around they say....sad...but for now...we're happy to have it and hoping it continues. With michigan's economy though, one can't be sure of anything...it's been in the toilet and the water's swirling for it's last hoorah!
0 -
Big SUCKAGE to all who need it!
Wish, MissShapen, Pam, Saint & Rock: Thanks for responding to my situation about ex-large boobs, and the choice to lose one or two, as well as the challenge of facing bc with all the tx and appoints, etc. from a wheelchair. I want a consult with a ps before surgery, as I would like a ps involved for the closing and neatness of the wound if nothing else. I am concerned about the length of surgery if both are done, as well as the healing afterwards. I have a feeling I would be wearing drains for a long time. IBC is very aggressive and the possibility of it appearing in the other breast is quite high, as well as recurrence in the affected breast. Since it is not found until stage IIIb or stage IV - being proactive seems to make the most sense. Eventually most things become funny to me, and even bc and ms have some hilarity in the midst of the chaos and pathos. I too could see me going in endless 360's when the chemo nurse stated that leaving one breast would make me list to the right. Rock, it appears I am just an overachiever. First MS, followed by 2 kinds of breast cancer and probable uterine cancer. The last will be treated after the bc is under control.
Saint: I feel you on dealing with your reflection when caught accidentally in a window. On the inside, I still feel mostly like me. Losing my hair was more painful that I had thought it would be, because for the first time I looked sick. Now I avoid my reflection, or I would feel compelled, when forced into public situations, to wear a feed sack and mumble, "I am not an animal."
Jerseymarie: My heart goes out to you. It is a sad situation in America that we have to beg for medication. I hate that part, and wonder if someone will decide I am to "rich" to receive what I need, or too "poor" to be worth saving. The guidelines for everything seem to vary so much. I too take about 2 doz. pill per day (it varies according to how bad the MS is) as well as daily injections, and bi-monthly injections. However I have to go 60 miles roundtrip to get my neulasta shot! I am on Medicare because of disability and the rules on many things make no sense, nor are they cost effective.
(((LuAnn))) here's wishing you a painfree, and a quick recovery.
Helen: I waited over an hour and a half before my last chemo got started because of some paperwork issue. It can be very frustrating. I hope your fractures heal soon so you will not be in so much pain. Is there anything you can do or take to be in less pain for chemo? You should not have to suffer in pain for hours. Do you have the choice of a chair or a bed when you take chemo? I do where I go, but lying down is the kiss of death for me because of muscle spasms that take over. Those gurneys are made for pre-teens weighing less than a 100 lbs. When I am forced onto a gurney, and then covered by a blanket, I look like a well-stuffed burrito that is about to pop out of it's serving slot. My chemo nurses have always been very sweet and accommodating until my last tx. Because of my disability, I always take a family member or one of my caregivers with me to assist with my issues. Last time they rudely threw my caregiver out of the room (although there was plenty of places for her). I tried to quickly explain to my nurse, who was filling in for my actual nurse who was on lunch, that I needed her to be with me. She assured me that they would assist me to the bathroom or whatever I needed. They are too busy for those kind of things. Finally a floor nurse overheard and put me in a private room with my caregiver. I am trying to figure out what I can do to prevent this next time. Perhaps carry in my orders besides having the dr's office fax them over? A call to the charge nurse the day before my tx about my disability and the need for a caregiver to accompany me?
Felecia: I am so glad your son got to enjoy his birthday with you and friends. I hate fathers who disappoint their children over and over and then expect you to jump through hoops to make it easy for them should the decide to show up.
(((Alaska Deb))) may you find some relief soon.
Wishiwere: So glad to hear that you have insurance again. I would be watching him very closely, because the future seems a little iffy there.
To all those dealing with hurricanes, tropical storms and their far-reaching problems - I am praying for you.
I'm sorry for those I missed, I am having huge brain fade issues. Even though I have re-read some of the thread - I still can't retain enough to respond to everyone. I slept ALL of yesterday. They would wake me up to eat, which was difficult because of mouth sores and a very sore throat, and I would go right back to sleep. I'm like a petulant toddler - I don't want to sleep - I might miss something.
On the eczema issue on the back of my legs. My DH discussed my allergy to all adhesives with the pharmacist, who decided that liquid bandage would be just the thing. I was very skeptical, because I was engaged to a pro bowler years ago and all the bowlers used a similar product called nu-skin. If you want to know what this feels like on an open wound, mix up some turpentine with a little thickener and paint on affected areas. As it sets you on fire, you will invent new cuss words.
Saint: Thanks for the heads up on photobucket. Below are pictures of Cisco. The first is him admiring himself in the dresser mirror.
Love to all,
~Bliss
0 -
Cute puppy, Bliss.
Man, that SUCKS to have to deal with incompetence in a hospital setting. So sad,when there are so many people needing and WANTING jobs, to have to deal with one that is only putting in time and no care about their patients actual needs, especially if it calls for anything different then the routine they are used to. Sad...
Sad to, that you are having to deal with all this mess at once!
I hear you about that liquid tape. I'm guessing it's like those that suggest to use 'superglue' on papercuts! Let me forewarn anyone thinking about! That craps stings like no tomorrow and doesn't stop when it dries! I think it finally quits when the nerves are dead, b/c it hurt forever! NEVER ever again will I do that! OUCHY in a major way! THANK HEAVENS is all I can say, that I was under anesthesia when they used it for my mast closure, b/c I don't think I could /would have lived through that experience! Imagine my surprise to wake up to a 5" X 1" cover of that stuff! I was thankful for no stitches, but woah! Thankful more that I was comatose when they applied it! WHEW!
0 -
Hey All,
Trying to catch up a bit after a busy weekend...
Harley - hope the idiot gyn wasn't too idiot-ish, and that lunch with Shirley is FUN!
Nicki - the look on that dog's face is priceless
Felicia - pond scum, lower than pond scum actually
saint - whasux? is my new greeting, and calling docs by their first names is my new POLICY
LuAnn - I'm looking for my wig, and I'm sure I have some hats to contribute as well
wish - glad to hear the insurance is straightened out for now
whoops phone!
0 -
Being bed/chair bound sucks! although I must go to the post office and grocery store today!!!! Anyway I emailed the mods to see if we could officially organize the exchange with thier permission with links tacked to the top of all the boards as we get it rolling. See guys, give me a purpose and I go sick or not! By the way, did I tell you abdomoninal sugery friggin HURTS!!!!
0 -
just got off phone with onc's office. i'm only on xeloda 1 lousy week and i feel like s..t. i know se's are cummulative and that has me very nervous plus she said to start the tykerb today and not wait for beginning of the next cycle. each day i have felt worse. but not with the most common se's (that's my mo). for one thing my sugar has gone up each day since i started xeloda. it's now 10-15 pts. higher. she said that is not from the xeloda. well how come before that is was perfect. i know all about the stress factor but my gut tells me that's not it. also so depressed over weekend all i did was cry. so i'm thinking ok that's because of my situation, but when i researched it last night...yes it is one of the se's. the nurse told me she said that 4000mg. is the right dosage for me...with the inference i think that a lower dose wouldn't do any good. other se's i'm having is vision is more blurry, i got chemo brain really fast. so exhausted i don't have energy to do hardly anything. lungs were so tight yesterday that they hurt. headache every day since i started. i'm so dam sick of being told that this se is not from medication. hummm. funny that they started since i started the med. i keep reading that lower dosages are just as effective as is a one week on one week off schedule. i think i've decided that although she may be a good onc...she is very rigid and just doesn't frickin get it. i'm just frustrated...i've already changed oncs and i'm restricted to local since when i don't feel well i don't have energy to get in shower much less drive long distances.and no i don't have anyone to take me. i guess i've just learned about the quality of life issue. before starting i actually felt physically well. i just don't know what to do. if this is what i feel like after 1 week what will i feel like after the 2 weeks plus tykerb.
0 -
Sucks you're not feeling like your old self on xeloda, Maria. Sound like some really sh*tty side effects for sure. Insensitive oncs with the bedside manner of a rock suck too (btdt!). I hope someone can chime in soon to give you some feedback on life with tykerb. Hang in there, my friend...
0 -
jerseymaria, xeloda has a nurse you can contact to help with s/e. Maybe between her and your onc you can get this under control. What dose are you on? I have heard that most people can get by with 2500 mg and still see results but the onc still start at much higher doseages!
0 -
ok now i've a doozy bloody nose.....I DO NOT GET BLOODY NOSES
and it feels like it's dripping down my throat luann - 4000mg
0 -
Big THAT SUCKS to all your SE's and the nurse from 'I dont' know hell-o!
So very sorry you are suffering...Hope you get some help soon for these! Did you try LuAnn's suggestion and call the nurse for Xeloda?0 -
actually the nurse is super nice. i'm going to call the xeloda nurse but can't with blood dripping.
what scares the hell out of me is that it's only 1 week. without tykerb. and what happens to me if i can't take it. then what? herceptin didn't work. now i'm crying...i can't h elp it.
0 -
jerserymaria, it sounds like your dose is way too high for xeloda! I have heard most onc to tell you to stop your cycle and they readjust it and you start fresh on the date of your next cycle. I am NO onc but it sure sounds to me like you have a problem!
On a good note! I got approval from the mods to do the wig exchange. We just have to get it started and they will sticky note it anywhere we want it!
0 -
{{{{Maria}}}} I just hate that we can't be there, to give you some much needed {{{hugs}}} and shoulderes to lean on right now. Darn its hard to be so far from one another when all you want to do is be there and offer some help....please know that!
0 -
luann suggested calling the xeloda nurse but i can't find a number on the 1 info page i got from onc. office. i did get the number for roche and i'll call them. what do i do if she says to just stay on this dosage?
0 -
Hey everybody,
Man, I'm glad the weekend is over!
Bliss, you made me laugh when you said that about the 50 gallon drum of chemo and going 'round in circles.....sorry it sux so bad...but thanx for making me laugh.....Your cute doggy looks like my poor kitty sorta...sniff, sniff.....I need to change my avatar again.
Helen, how did you break your ribs? I remember when I thought my expanders were going to break mine....GO COWBOYS! Felicia....that goes for you too! And, your sperm donor comment made me spit out my drink almost!!! lol!
Trish, that answer you got just burns my *ss! Are you kidding me? I would have a hard time not reporting that to someone of high authority there.
Maria, I'm sorry your doing so bad girl..... ((((((((((((((((((((((((hugs)))))))))))))))))))))))))
LuAnn, glad to see your doing better. I was thinking about you this weekend, Deb too. Also, that's great about the wig exchange. Where do we begin???? Maybe we should talk on the phone about legistics??
Everybody else.....whasux?????
I would talk about my weekend but, Rock's eavsdropping friends have me all paranoid!!!!!!!!!!!
I'll just say this: I am more confused than ever but, came out of it feeling a teeny tiny itsy bitsy little bit better about myself physically.
Gotta get back to work. Love u guys!!!!!
Hugs, Traci
0
