Im bitchy, I moan, I groan.....anyway.
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I hate reading about progressions - you all have my prayers and healing thoughts.
I'm not one for sucking it up and going to work when I don't feel like it...anymore, anyway. Back a number of years ago I went to work in the mornings and went home to bed in the afternoons - while I had pneumonia. The doc threatened me with hospitalization if I didn't stay home.
Had the colonoscopy - all clear, one little polyp removed. The prep was worse than the test. The 2-step "EZ" method. Man, that stuff is nasty.
Made the appointment with a new oncologist. This one was recommended by the radiologist who did my biopsies. The one I saw last year wasn't a good fit at all. The rad onc called him "Dr Gloom and Doom" and the radiologist said he was a minimalist treatment-wise & understood why I wanted someone else. This onc is BC only & at another hospital. Couldn't get in til Sept 17. Also made an appt with the surgeon for the 19th...we'll see if surgery is warranted or not. My PCP called & offered whatever help/support I needed - meds or otherwise.
I'm such a fatalist. Increasing risk isn't something I deal with very effectively.
Getting #1 daughter ready for her senior pictures. Yikes. 18 years ago I was pg with her & mom was just dx with BC & had her MR MX. That was a tough year...hard to believe how much better things are now.
Saint - the joy of this is that you can say whatever you want to say...no one will ever tell you otherwise. Be pissed off & tell us. Like Traci says, just be ready for someone else to come along and say, that's fine, but this REALLY sucks!
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HI all:
A gentle hug and THAT SUCKS for those who need it. Nothing going on for me so far today - thank goodness... unless you count sore finger nails - but the toe nails no longer hurt. I can hardly button a blouse. And DRY skin. I feel like I need to soak in baby oil or something. Even my face is flaky and I feel like I have dandruff of the face. I use Dove for sensitive skin, but cleansing lotion on my face and slather with lotion. Have not used soap on my face in over 40 years ( I am 62).
These things seem quite minor in comparison to mets, recurances, scans, colonoscopies. drug related issues, and idiot doctors and technicians and insurance -- big time IOS. Since I live alone, I tend to concentrate on my own pity party and need the reality check that I get here reading about much more serious issues. I wish there was a magic formula to get through all this, but we all know that ain't gonna happen anytime soon.
HUGS and BLESSINGS, Nancy
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Saint, welcome! Say whatever you want. PLEASE go on, as a matter of fact. And telling others to be well and stay strong could never be wrong.
MissS--I worked about half the time during chemo, would have it on Thursday, and go back to work a week and a half later on Monday. Then if I had doc appts. I would take sick leave to go to them from work, and usually not go back! Nobody minded. I AM a long-term government employee with a very good reputation,though, so I guess I should be counting my blessings. (I am). I am about to start rads and am hoping it will be easier than chemo was. The rad onc said people with fair skin tend to do the worst with skin symptoms and "unfortunately you are the fairest of the fair"....I just put my hand on my forehead, palm out (Princess style) and said, "It's good that you know that about me"...
.....Then I told myself that I have a strong body and I am just going to wait and see what happens to me.LuAnn--so sorry you have to wait through the weekend for your scan results. Maybe we could all start chanting, "clean scans, clean scans..." Seriously, hope you are able to rest and be peaceful this weekend. And you will be in my prayers.
Pam, congrats on a clean colonoscopy. I have to do that soon. Yech.
Hope everyone has a great rest of the weekend with no suckiness!
If I missed anyone, sorry......
Sue
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Sue, so YOU'RE the fairest of the fair! I couldn't quite make out the name my mirror was saying to me when I asked that question.
Speaking of rads, my red-headed friend did just fine and I had such terrible skin reactions, my rad onc cut my tx short and I never got the last 5 or so tx! It was kind of crazy. About halfway through my skin was looking great. I was using Aloe Vera Gel and Aquaphor and I seemed to be breezing through. Anyway, toward the end my skin got so raw, it was disgusting. I posted pics here somewhere, but I won't subject anyone to those those again. Anyway, the skin on my chest was decaying. I was walking around with rotted flesh!
A funny lil story goes with that.... every time I went potty and wiped myself, I smelled terrible. I thought the odor was coming from my kitty. I could not understand for the life of me why my kitty smelled so foul. I washed it and scrubbed it and still the horrible odor. After about a week, I realized my nose was right by my chest and it was decaying flesh I was smelling and kitty was fine. LOL How gross is that story? LOL It's so nice to have a place where nothing is taboo!
BTW, my chest healed just fine and I have creamy white flesh now.
Hugs,
Miss S
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Oh my MISSS! Wheweeeee! I can NOT even imagine that~ It's a story like those who talk about the oh never mindd....too gross! Glad you healed well after though, I can't imagine. Especially when my nose was so sensitive through chemo, much more than the taste problem. I'd have had to get some nose plugs I'm sure. I couldn't stand dh's deordorant he's used for years, the floor clearning solution (NOT a bad problem per se
, or milk (smelled sour, but my kitties thought it was fine). I had a problem even in the grocery store getting ill near the meat dept! UGH!Pam, very good news on the clear colonoscopy! Whew!
Saint, welcome...and what sue said too!
Lefty? I had major changes in my skin. Haven't been able to use soap on my face for years b/c of sensitive skin. NOW I can. Really weird! I did have to use some of the kids facial cleansor for a while after chemo b/c my face started to dry out and break out at the same time. IT was something dd had left here and worked great. But my skin is no longer as sensitive, although it nows breaks out from lotions
Always a change...nothing is NORMAL anymore {{LuAnn}}...keeping a prayer in my heart for you for your scan reports! Hope you are enjoying your weekend with the kids!
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leftyAKAnan
When I was on xeloda w/ major peeling hands and feet and dry skin, it was rx'd that I soak in Dreft washing soap (baby clothes) I thought they were out of their mind. Then I remembered that when my son had a major second degree burn on his hand the ps rx'd that he soak that hand in Dreft also. I figured that I didn't have anything to lose-so why not. The Dreft made the water feel like silk and it felt sooooo good. Plus the dead skin did debride off. A lot of the skin itchies are from tiny pieces of dried skin moving in the wind.
I also used udder cream for my skin for moisturizing
Hope you find some releif soon. Itchies are a big IOS
SAINT--- Good to see that you found the boards. I don't go into chat much anymore, and do miss all those I used to talk to.
NIKKI- what can I say. So good to find you again. Enjoy your week off
Helen
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A big THAT SUCKS to all. I have been reading, but hands shaking so bad typing is still hard. I sometime feel overwhelmed with all the crap we all have to deal with.....
Now listen to MY crap.....
headaches, palsy-like shaking so bad I look drunk, leg cramps, exhaustion, did I mention HEADACHES?....and best of alll; in spite of about 5 nausea drugs I am still having hours long puke-fests every 2 or 3 days! Puking is just wrong! Dry heaves are worse.
Whew....feel better venting
Love you guys
Deb C
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Wow! Helen1 and Saint in one day? Im feeling like a hot flash is on its way.
Helen1: Wow it sure has been along time. I smiled when you said you have been reading for the last month. We definitely have some good laughs here, along with our IOS's. The fact that you had progression in January deserves a big that sucks! Yet such good news the tumor markers are coming down. You were one of the first persons I met on the chat and I loved our early morning talks. Im so glad we have run into each other again - your a special friend and I hope you keep coming back here. I am enjoying my vacation and so happy to hear from you again. IOS = incidence of suckage!
Saint: I feel like we are having a reunion party. So good to see you here. This is a pretty cool thread cause you can basically say what your feeling. Good or bad. Sometimes I walk away feeling sad cause there are so many that need to hear "that sucks." Other times I walk away in tears from the funny things people have shared. I think it was Hanna who told about her poll dancing. I almost wet my pants. You also are one of the first persons to reach out to me when I first came to chat and Im so happy to see you and be able to talk to you. I didnt know you just found out about new progression. That definitely deserves a hearty big "that sucks." So what will the plan be for you?
MissS: Yes, I feel like we have walked the same journey. So much in common. I bet you and I actually talked to each other on the chat too. Once I returned to work I had to come to the discussion boards as I didnt have the chat time any longer. Goodness though there were days I spent hours talking on the chat. It also made me crazy when I would here someone say they worked full time without any problems. I would look in the mirror and wonder what was wrong with me. I worked during chemo, it wasnt easy, and some days I would have to come home early and just crash in my bed. I lived in my bedroom for 3 months.
Pam: A tender moment with your daughter. I hope you got pictures.
Nancy: Having to go through this alone deserves a big "THAT SUCKS." So Im sending a big hug your way.
MissS: Oh my, even though it was gross - that is such a funny story. Poor kitty though - taking the blame.
Wish: Strange things happened to my sense of smell too. I could not be near poultry. Chicken, turkey - just made me want to puke. On ThanksGiving during my chemo, everyone wanted to know what was wrong when I turned completely green and ran away from the dinner table. As soon as they put the turkey down - I knew I was a goner. I think the only thing I ate that year was cranberry sauce and I hate cranberry sauce - but it tasted good that day!
DebC: Well I do believe you deserve the award for the biggest suckiness of the day. I just hate that you are going through this. Sure hope your not getting dehydrated. Have you tried Ativan with some of those antinausea meds? I was always told it would help with nausea. Dry heaves are the worst and no doubt about it. Oh and shame on me for mentioning it, but have you tried Marinol? I have seen it work with severe nausea. It might make you a little loopy though!
Today has been a sucky free day for me. Think I will just sit back and take some time to be thankful for all the friendships I have made through this journey. Couldnt have done it without ya all.
http://uk.youtube.com/watch?v=WauFkb4jmCI
Nicki - aka chemosabi
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AWWW deb--so sorry!! Call those #$#^% docs & make them give you MORE drugs! That just sucks!!
Helen! I am trying to be sure who I reconnect with---didn't you have some bone lesions in your mouth from tx?
AKA--good to find you here!
Sue---I could say TMI----lol---but not on this thread & that is why this is a great place! On one of my chemos it WAS me who stunk when I wiped------if you really want tmi-- I hate being bald cuz then when you pee the hair isn't there to direct the flow & your whole danged butt has to be wiped!!!! SUX lol
I think this could be just the closet I need to let out a few screams---ty for the welcome & give me time to get to know everyone....HUGS MY NIKKI!!!!
be well & stay strong
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yeah saint it's me= ONJ of the jawbone from aredia also have some mets in the same area as well. fun just never stops
Helen
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Quickie drive-by post -
Deb - you are so good to give us an update despite your challenges. Can't you puh-leeze get your docs to control your nausea? I know you don't want to be constantly pestering them, and I know you don't want them to resort to IV meds, but the dry heaves are simply unacceptable! Day-um!
Saint - welcome! I think I know why you are seeking that closet to scream in - but you've got nothing to blame yourself for. Letting out a few yells can be mighty therapeutic, however!
Sue - LOL about your "fairest of the fair" response. Good luck with the rads despite your skin like a baby's bootay.
Fixin' to bbq this evening -
Lisa <---who also was not allowed to work through chemo
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Rock's Tribute
Do you remember her Avatar with the sunflowers? Do you think she'd like this?
Enjoy the day, Karin
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Nicki,
It is good to know that having problems with numbers may be related to the chemo brain... I sure hope my brain will start to function normally again soon.
Deb C,
Awww.... puking SUCKS! I read your other post on the mets thread, and I'm sending you HUGS and praying that your surgery goes well!!! Your posts always make me smile!! Hang in there!! You are in my prayers!! As soon as you can, please send us a message to let us know that you are doing ok... You'll be just fine!!
Shirley,
I'm praying for you, and your brother, and the children... I think you told me about her, and that is just SO very sad!! I'm gonna call you later!
LuAnn,
Scans suck! I'll be praying for you, that you'll have all clear scans!!
Miss S.-
You know, I had thought about working in the schools, but I haven't figured out where to go to fill out applications... I'll have to call around and check... sounds like a great idea! Thanks!
Christine,
Oh.... so NOW I know... I wonder why that stupid onc. nurse didn't tell me that Claritin would help with the bone pain! It was just awful!! My onc. didn't charge me for the Neupogen shots, and that is why I got to take them home with me. I gave them to myself, up until the last one, for some unknown reason, I couldn't get it all the way in. My dh was home, and I got him to give me that last one. I put them in my abdomen, and it didn't hurt very bad by doing it this way. I think it sucks that they won't give you the Neupogen, so you won't have to travel to the center every day just to get those stupid shots!!
Hope everyone has a suck-free holiday weekend, with no IOS's!!!
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Sue, I'm sorry I haven't been online to say "OF COURSE!!!!!! CALL ME!!!!!"
I've been stuck in my own little pity party this weekend. Thank GAWD I have tomorrow off cuz I'm not done yet. Everything sucks. People on the Gulf Coast are getting pounded as we type and all day long I've been watching the weather seeing Tampa off to the right of the t.v. screen getting more home sick with every passing minute.
I managed to drag my fat *ss out of the house today to go to get cat food and ended up spending $250 at Target.
I bought some clothes that I thought I might look half way decent in for my friends arrival next week which I am getting more stressed out about by the second. I bought twice the size I'm used to. WTF? And then, I tell myself, "eat lettuce" and what do I do? I make tacos. Then, I eat chips. Then, I ate left over meatloaf. I swear, I've eaten enough today to feed 4 people. What's the matter with me??????????? Why, oh why, can't I get my sh*t together? I'm so sick and tired of feeling like this.
I actually got very mad today cuz my new back neighbors cut away all the over grown trees and bushes and now I can see what they are watching on t.v. which means.....they can see right into my house too!!!! So now, not only do I stay inside but now.....I've closed the blinds too!!!!
I'm so sorry for everybody that is puking and in pain and having progression and have sick friends........everything sucks.
Hugs, Traci
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Just a drive-by post......Nikki-I will have to do chemo again, but since I haven't done xeloda yet & hope to try that & keep my hair for a bit longer! Bald for 14+ months--THAT sux@@!!!!
I can not figure out how the ins works on shots!! I had to have daily blood thinners after I broke me femur last year (THAT suxed!) We are 5 minutes from our hospital & ins would NOT allow me to go there to get my shot everyday! I did it myself. I'm proud I actually accomplished it -NEVER thought I could. Getting to the hosp everyday would have been horrendous----but go figure---others are not allowed to give themselves their own shots????? Ins in this coiuntry SO needs an overhaul.......where is the consistency?
Today's IOS---little dog has the trots! I am worried about him since he is so small I think he can dehydrate pretty fast (he is making my house smell like the humane society--that sux!) My animals ONLY get sick in the middle of the nite, weekends or holidays!!!!!! ONLY!
So glad to find old friends here & I think the new ones are going to be just as great. I am happy that I finally learned to navigate the boards. Thank goodness for faithandfifty's short visit! she also taught me how to post pix-----so here is one of me skydiving just after my mets dx (it has been around the internet a bit! LOL)
Hugs to all----Be well & stay strong
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You know what else sucks? I never used to use the "active thread" button. Somehow, it recently "re-appeared" to me and I gotta tell you, I want it deleted. Can I just bitch about this a sec?
Cute bras? Yea, that made me feel like sh*t. I gotta stay away from that button.
On a lighter note.....there is a window sill here by my laptop. My cat Dallas has a pillow there. Well, the little kitty from h*ll just jumped up on the pillow and Dallas got her in an immediate neck hold!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I'll have to post a pic on Tues....my real computer is there.
Hugs, Traci
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Okay--had a long post with comments to everyone almost completed, and hit the wrong button and everything disappeared, so I'll just settle for a quick "that sucks" to all--most especially Deb--puking and dry heaves suck and I'm so sorry...
And MissS--your poor little kitty story had me rolling...
Suck-free labor day to all!!
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I don't know..but now I am freaked.
I am such a pragmatist, but when it comes to things like this, I just say "I don't deny the possibility." Keep us informed~~~ooooeeeeoooooeeeeooh!Funny, we were laughing tonight at dinner, telling friends that we'd buried both of DH's parents' ashes in the tomato patch at their Jersey shore beach house. We sold the house last year after MIL died at 99, having owned the house for 75 years. DH said we'd wondered if their spirits were there in the house. Shades would rise and lower with the slant of the sun, windows would be closing in case of rain, and pictures falling, since FIL hated nails being driven in the walls.
Probably be some great tomato crops, too.
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Great stories at 3:49 am! Wonder if I can return to sleep now, thank girls!
J/K! Love spooky stories of haunted houses.Big that sucks to Traci and her worry about friend coming and feeling down
Hope the visit goes so well, you forget your worries and relax and enjoy the time spent renewing the friendship!Saint, Love the pic! Hope you have one more close up for framing, that would be a cool thing to put in the hall where you'd see it first thing in the morning for inspiration of what you can do!
Sorry you're having to do chemo again, THAT SUCKS!{{Deb}} keeping you in prayer dear friend. Sure hope you can get some meds changed to settle those Se's down at least to a no puking or dizziness and double vision response! BIG THAT SUCKS!
My IOS, is small, but bothersome...waking up every 1 1/2 hours with hip pain, shoulder pain and hot flashes when it's 55 degrees, but no wind, so I have the A/C and still hot! UGH! I hate the cost of Se's lately! Between all the extras (Vitamins, and supplements and A/c and OTC relief) I'm not sure I can continue with this crap! So far I've only used the A/C and OTC, trying not to get into more pills, but darn it, I've about had it with this MESS! I'm tired and just want to sleep ONE freaking night through! UGH!!!!!!!!!!!!!!!!!!!!!
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DebC ~ Do you take Reglan along with the anti nausea meds? I tried them ALL and nothing worked until the onc added Reglan. What the hay, it works to stop acid production so if nothing else your stomach won't burn from all the pukiness in it! Hope you're feeling better soon!
Nico
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Whoa to Hanna's post. I completely believe in that stuff and have posted someplace on this board about the "other worldly" things that have been happening in my mom's house since my stepfather died there last year. My brother did not believe in that stuff until he stayed at my mom's last winter. He finally got so freaked out by it he made reservations to go home sooner than planned.
I wanna drive down Hanna's road...but not at night.
Here's a big THAT SUCKS to everybody who needs one.
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Okay, this is not a big deal in the grand scheme of IOS's, but it's eating me up this morning....none of my family has seen me since going bald, and ds arrives this evening. I am so dreading the look on his face when he sees me for the first time. I had planned on sending him a pic to prepare him, but he threw me a curve and is coming two days early with not enough warning to get that done. I always go commando at home, but I will put on a ballcap when he gets here...can't believe how much this is bothering me.
THAT SUCKS to all with IOS's!!
Sherri
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Sherri, if he's like most kids, he'll probably pull that ball cap off your head, give you a warm fuzzy rub, and tell you how you look great and he loves you!
Yes, it's hard, my mother and brother both made comments about how I had the best had in the family for it (going bald) Gee, thanks, I feel so much better knowing my head was perfect for chemo! UGH! What ever...but I must say, our own kids seem to feel what we need and extend that to us. You could have dh draw a face on the back or something to get a chuckle out of him, if you think it will bother him. Personally, I don't think he'll have a problem, as kids are so used to seeing stranger things in others now-a-days.
But I feel for you, b/c yes, it's something we all fret over. Our bald heads, imagine that, when it WILL grow back, but our breast won't? Strange beings we women are!
Good Luck tonight and let us know how it goes with the welcome home!
Patrice, that would be hard to stay in a haunted house. My mothers still alive, but not sure I could stay in a home where someone was haunting it. Thank you Dad for NOT doing this to the family home! It sits over a dark ravine above a river and it's spooky enough without that!
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Sherri, I was like you about my son seeing me bald for the first time. I put my wig on for his arrival and then slowly removed it. He reacted the same way Wish described. No big deal. I didn't put my wig on for the rest of his visit and only wore a baseball cap when we left the house.
Take a deep breath and relax. Your baldness will represent to him that something is being done to get rid of your cancer...that's what my son said. He actually found some comfort in it, in a weird way.
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Yep, that's what they look for. Loss of hair is a good indication the tx are reaching what they need to! Good Point Patrice!
Should have included {{{hugs}}}} for you too, Sherri. I wasn't trying to downplay, just trying to help you understand he will be supportive I'm sure. Kids are so resilent! More than their mom's I think in a lot of ways! If we saw it, after an absent in them, we'd be so horrible hurt for them...as my mom was...
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gsg
interesting thing you mentioned about your son and finding your baldness comforting. I really get that---I am on AIs and there is nothing really visible (other than moving really slowly some days) for my family (or me) to see or hold onto. In a weird way the SEs let me know that the meds are working.
perspective really changes
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Hi to everyone. I'm enjoying Labor Day so far. No IOS's to mention. Still in my jammies and sitting on the bed while using this laptop. That way I can take a quick nap if I want to. Its gonna be one of those days if ya know what I mean.
I have been watching Gustav on CNN and hoping that anyone in the path of this storm stays safe.
Saint: You cracked me up with the peeing story. I still have the brazilian look as hair didnt grow back in certain places. Saint, sucks you will start a new chemo but hoping Xeloda does the trick. I have heard good things about it. What a cool picture of you sky diving. Hoping your little pup is better. Maybe he/she just ate something wrong. And yes, doggy trots and cat vomit - always a pleasure waking up to them. With that being said, I do love my animals.
Hanna: Im very superstitious and your story gave me goose bumps. Sounded really scary to me.
Wish: A big that sucks for needing A/C when its 55 degrees. Although I can remember last Winter I had my bedroom window open when it was only 10 degrees outside. Hot flashes and SE suck.
gsg: Im with you, I want to go on that road but not at night lol.
MsKarin: Welcome aboard, you have been missed.
Harley: Good to see a post from you. My onc did something a little different with my neulasta shots. He said there were some studies that showed it could be given the day of chemo instead of the day after. So I got my shots the same day as chemo. His nurses were so mad at him! Anyways, they worked just fine. Although after my first shot I was surprised at how severe the bone pain was. No one told me about claritan either. I still throw things at the television whenever is see that neulasta commercial!
Traci: Sounds like you have a sucky week-end. Hate when those feelings come along. We had a neighbor that did the same thing last year - with the trees and bushes. I was so upset because we had such privacy before he did that. The trees and bushes were on my property to boot. Lettuce? Who could eat just lettuce? Im with you on the wt. gain - its sucks big time. I having a very difficult time shedding it off myself. Of course Im doing the same thing as you. End up eating everything I said I wouldnt.
Lisa: Such good advice for DebC.
OK - time for a nap. BBL and a big that sucks to everyone who needs one.
Nicki - aka chemosabi
Helen1: Hi to you.
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Hanna, No goat cheese, but I could surely feed a goat cheaper than it is to run that mower over 2+ acreas! Great thought! Wonder what dh would think if he came home to a goat in the yard!
Oh my! Venti sized triple pump mocha frappucini! That's my poison! Oh my , oh my! I'm not even sure if there is coffee in it, but the triple pump makes it the best I've ever had to drink of anything! I'm addicted! Fortunately, dd bought me a little machine for making the coffee, so we use that and then she works for a place where we can get the additives (not sure what you call it) to make it frozen when adding the ice and chocolate. That's the ONLY thing we are missing. Her work gets the vanilla but not chocolate mix, so we just use herseys, but it's not the same. I break down once a week for this treat on a day when i'm feeling blue, or having one of those p*ssy days, or just plain think I've earned it for putting up with life as it is!
Works for me. Dh knows if he comes home and I get one of those, I'm good to go for his 34 hours home! At least he thinks that's what does it. Just having him home is good enough, but hey...I'll accept any offer to treat me to a triple mocha frap (venti) size. Those things are huge! 0
