March 2011 chemo-lounge
Comments
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I came across this blog post and it reminded me of our discussions about making changes.
http://leftbreast.wordpress.com/category/day-by-day/2011/06/03/control-freak-who/#entry
Some of us might decide to become all-organic, ovo-lacto vegetarians and drop 50lbs. Others might decide to start training for a triathlon. The changes are really about control. We lose control when we get the cancer diagnosis; we can't control cancer. But if we can manage some other, even small, area of our lives, that can make us feel in control of our lives again.0 -
Thanks to everyone for the congrats. I am so happy to have chemo behind me. I see the surgeon nxt week and will go from there.
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Hi all -
It was 6 months ago this morning that I found my lump. What an insane 6 months...
Like a few of you, I am also dealing with neuropathy. Mine has been tips of my fingers and toes (more difficulty with the fingers). Have only lost 1 big toe nail so far but a number of my fingernails are lifting and the 1 thumb nail appears ready to drop any time now. I REALLY hate this aspect although I keep saying that it's worth it to be rid of cancer. My logical brain knows this...
Kymn - You will start to feel like yourself in no time. How awesome to put this behind you!!
ksmatthews - You too -- yippee! We're in that small subset of folks who have to deal with the surgery post-chemo. I keep saying that since so many awesome women here have gotten through the surgery, I will too.
lilylady -- Good for you for the boogie board action. The scraped up face is definitely something I would do too! Someday you should definitely visit Cape May -- it's fantastic in many ways. Hope yesterday's Tx was uneventful.
Rabbit - welcome, welcome if I didn't already say that.
DivineMrsM - did I ever tell you how much I enjoy your quote in your sign off? I read it all the time and it never fails to bring tears to my eyes and simultaneously remind me that I can get through this crud... so thanks for that reminder.
Sending hugs, good vibes and prayers to all.
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Hello Ladies
Haven't posted in ages but got the itch tonight. Finished chemo June 23rd and after the big let-down of still having to deal with side effects, I am slowly coming around. 21 days after chemo, I'm still dealing with neuropathy in my feet big time. Have also had problems with fingernails lifting. So far, I have lost a thumbnail and I am sure there are 3 or 4 nails that are on their way as well. Still dealing with the runny nose and the lovely "slime mouth" as I call it. I'm also so sick of the hair loss thing. I have maybe 12 eyelashes total upper and lower on both eyes and like 8 eyebrow hairs. Enough already. I have some regrowth on my scalp but, of course, it's white for crying out loud!! But on the upside, my surgery is scheduled for July 27th. Can't wait to be "cancer-free"! I started working with a personal trainer 5 days PFC. Figured I had 5 weeks to get my saggy ass into some sort of shape before surgery. It's been brutal, but feel better about myself already after 2 weeks of workouts. Does anyone else suffer from "chemo thighs"? I've heard about this muscle weakness before but until I experienced it, I didn't really believe it! Just call me jell-o legs! Starting to stress a little bit about the surgery now...only 14 days til then. Still don't know what they're removing and my rads depend on the results. Could be 20 or 30, depending. Have yet to take time off work, so this is all very new to me. Have a friend just diagnosed with colon cancer. Have had many people remark how hard chemo is on him, compared to how easy I had it. Are they f-ing kidding me? Reminds me of the Oscar-winning performances you guys were talking about a few weeks ago. Having a little pity party over that...I guess I hid it extremely well...lol. The road has been very long since I found my lump and KNEW what it was on February 8th. With surgery and rads still in front of me, I'm looking at October as my finish line, if all goes well.
Well, I've babbled long enough. Even though I don't post a lot, I check in once or twice a day. Don't know what I'd do without all of you. I feel like we are a sisterhood, complete with our travelling pants, which is BC. No one else can begin to understand...
Xo, Sue
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Suebee48--It's as if cancer is a competition. Who has the worse cancer? If your cancer is deemed to be bad enough or if it appears that you suffered enough through chemo, you win more sympathy.
I spoke to someone on the weekend who used to be a friend but went off the radar for a number of years. He just heard about me, so it might have been a shock. But he was really weird on the phone. He asked if it was a bad cancer. Duh? Aren't they all? The whole conversation rated up there on the "dumb things people say" scale. He also commented that at least I was "still kicking" and that was the main thing. Yep, still kicking.0 -
so true. Felt like saying: yup, I'm so lucky I got a good cancer. How messed up is that??!!
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I continue to be shocked with the stupidity that comes flying out of people's mouths. I also put on a positive face and voice and probably do it as much for myself as the person I'm talking to. Friends say "you sound great and you have a great handle on things" and thats the last I hear from them. Guess they're giving my 6 mos to a year of solitude and then they'll check back in. I hate to be a downer but this bc (aka "traveling pants" - LOVE that SueBee) has really negatively impacted my opinion of people...
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Ladies i am so thankful to have found you all. When i read your post i realize i'm not going through this alone, i'm experincing some of the same SE as many of you. It's been six weeks since my last chemo and i still have neuropathy in my feet, my left is worse than the right. The bottom of both feet are tender and a little swollen, i've noticed my shoes seem tighter..(i guess i need to take off my 4inch heels for awhile and let me feet heal...lol) . Also about three of my fingernails are loose. My two middle fingersnails are barely hanging on...wonder if there is anything i can do to keep them from falling off...hmmm... I also have a dry cough..anyone else experiencing that?
Lilylady - so glad you had a good trip with your girl friends.
Suebee48 - i know what you mean...what is GOOD CANCER??? My boss had prostate cancer a few years ago, when i got dx he told me to be glad that i ONLY have breast cancer because prostate and breast cancer are the GOOD ONES..huh...i didn't know there was a such thing as GOOD CANCER!!! However I am thankful that there are meds and other treatments that can be done to combat this horrible disease "BC".
Ksmatthews - yaayyy you are done with chemo soon the surgery will be behind you too.
Kymn - i hope you are feeling better and getting stronger day by day.
Okay ladies all of you have a good night.
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Hi ladies spent the whole day in bed sigh 13 days out from last chemo and all of a sudden I have cement in my arms and legs. I got up to go to work and could barley make it to the toilet to pee for petes sake I called in and decided to listen to my body. first time I have felt like this I mean I have been tired of course but never felt like someone replaced my blood with lead before. Hope it passes quickly. And my eye is still twitichy....just gotta say cancer F#$%in sucks
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DeeDee2--I have the cough too. Drives me nuts. I've wondered if it's the herceptin which means I won't be rid of it any time soon.
Kymn--Twitchy eyes here too. I'm just glad it's invisible. People would think I was a lunatic if they could see both my eyes twitching away. My eyes are also somewhat swollen which just adds to the joy.
Has anyone read 'Your Brain on Chemo' by Dan Silverman and Idelle Davidson? Interesting. Nothing jaw-dropping but they validate anyone who feels that chemo has messed with their memory and ability to function, even if the onc tells them it has nothing to do with chemo. The remedies are not surprising--good diet, intellectual exercise, anti-stress measures.0 -
Kymn: Glad you are resting and hope the lead feeling goes away soon....my legs were super tired and burning (chemo legs) through chemo and for a few weeks after I got done. Then it went away.
Silia: I too reflected on my 6 month day from dx. It was hard to comprehend how much had happened during this time. I am sorry about the nails and neuropathy...that stinks
Suebee: I can relate on the lashes....mine are vacating quickly. I am using latisse so I see new one's growing..but they are so short you can't even notice them. I only have a few long ones left on top on each side. Bottom almost non-existant. Brows hung on...lost about 50% but they grew back super fast....now I am tweezing a lot to try to keep up with them.
I too am shocked by the stupidity of people acting like BC is no big deal...especially if they think you "look good". It's like if you look good they think you are not sick and have not suffered at all. I try hard to look good becaue I have a young child and don't want him to worry but it doesn't mean this was a cake walk. For me I am still dealing with skin issues post chemo. My itchy rash continues to drive me crazy over 9 weeks post chemo now. I can't get relief for more than a few days at time. This has been going on since before Easter...I am SO sick of it....I am beginning to think it wiil be a permanent side effect and it's so uncomfortable. I go back to the dermatologist again today.......it was so bad 2 nights ago I had to get up at 3am and take a cold shower to get relief. Between that and the hot flashes.....help me!!
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For the ladies facing surgery post chemo...I had surgery both before (lumpectomy) and after (re-excision) chemo. Chemo did such a wonderful job of removing the cancer that remained, I wish I had had my first surgery after chemo. I probably wouldn't have needed a re-excision. I really wasn't offered the option. I sure things will go well for all of you.
4 1/2 weeks post final chemo and the main side effects I'm still experiencing are post nasal drip, and the cough that accompanies it. Also fatigue and the tired leg syndrome. Luckily, my nails have hung in there. No new hair or eyelashes yet, although with a magnifying glass, I might be able to see a little white fuzz sprouting on my head.
Kymn, you did the right thing by staying home and resting. It was about 2 weeks post final chemo that I ended up in the hospital. Take care of yourself.
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I started my radiation yesterday, and was upset to find out that you have to sit in the waiting room in your hospital gown with men and women. I guess they assume since it feels like a million people have seen my boobs now that it's ok to have to sit in a waiting room in my gown. Thanks for letting me complain. I thought I'd be ready to get this done, but it really felt humiliating.
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I'm only 1 week pfc, but I love how that sounds--**PFC**!
I'm finally out of the hole. This was a tough one, not because the usual SEs were worse, but I was absolutely zombied! For 5 days I couldn't focus on anything for more than a few minutes. All I could do was stare at interior design shows on TV. If I lay on the couch and watched them, I'd doze off and miss the big reveal. However I did get in for both my workouts with the trainer. One was pathetic and today's was pretty good. I'm starting to taste things again, big D is settling down, and I have some energy. I'm ready to call chemo a done deal and move on.
You ladies who do the surgery post-chemo have some advantages in that you get the proof that chemo was worth the torture. Now I wonder why it wasn't an option for me after the lumpectomy to do the chemo and then re-excise to see if the margins were clear. I did 3 surgeries, including the MX all before chemo. I'd ask the onc, but maybe I just don't want to know at this point.
One the steps outlined in the 'Your Brain on Chemo' book is to only focus on those things which you can either influence or control. Worrying about stuff that's in the past or that you can't truly control just adds stress and reduces energy. So I'm happy that I'm considered to be cancer-free and am improving my chances for no future recurrence with chemo and herceptin.
I hope everyone who is still climbing out of the hole is a bit closer to the surface today. Is there anyone who has yet to finish? March seems like so long ago and now here we are.0 -
Taxol #8 of 12 this morning..."only" FOUR MORE....please, body, don't give out on me...time for my post-Benadryl nap !!!
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Jules - we sound pretty similar - still have the post nasal drip, watery eyes and cough - but no real symptoms from rads yet, just starting to go a bit pink. Working hard at the gym to get thhe fitness back but its hard.
It is interesting the pre/post surgery thing -noone ever said it was an option for me. Its really positive to know that those of you who had chemo first all demostrated that it works though!
Colodisneylover - same deal with the hanging around in the waiting room in the gown - guess they are trying to make the best use of the machine time. I am sort of past caring now though. I just cross my arms over my boob.
Hope you all have a good weekend, I have my presentation to write for the 26th July seminar - always leave these things too late.
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Happy report !!!!...I am feeling a significant amount of difference (much less) in the neuropathy of my feet...had acupuncture Tues. evening and this time she attached electrical stimulators to two of the needles. Kind of hard to get used to at first and made my muscles twitch a little but I noticed an improvement in the feeling this afternoon. Worth a try if any of you have had similar SE.
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Heading into chemo chair tomorrow for my second to last Taxotere. I will be so happy when Aug 5 is here and I'm DONE (realizing I'll still have my post-chemo cruddiness to contend with...)
I feel really stupid, which is why I didn't ask the question a long time ago. What does PFC stand for? I'm sure it's post chemo so does it stand for post f#$% chemo?! If yes, that's great. If not, I can't figure it out.
Have read everyone's updates but too tired to respond. Sweet dreams to all!
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pcf=post final chemo, or post f(*&% chemo. Your choice.
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I like post F%##*&% chemo better...it seems more appropriate.
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Day 2 post F@#$$?%% chemo. Everything tastes like crap-usually for 2 weeks. No vomiting this time. Got both Emend and Zophran. Also got my first ever Nuelasta. Tokk the Claritan and have had no problems. Just very tired. Pushing myself a little-need to get some stamina before my suregry Aug 8. Which I am getting a little nervous over. Bi-lat mx.
Between July 27 and Aug 25 they have me scheduled for one thing or another-13 different appointments. Several kinds of scans, physical, Muga, surgery, Herceptin infususions, bloodwork, lung and liver docs, ect. Have yet to talk to a radiologist-they want to see if I am going to have liver/lung surgery first. If not rads to start in Sept. It would be nice if they could get some of them on the same day but that isn't working out.
I have said it many times but I don't know how I would have gotten thru this if not for you guys. AS far as "good" cancer... I started out Stage IV but I never ever thought I am so worse off than anyone else. We all have chemo, surgeries,rads, side effects, and idiotic people to deal with. Cancer sucks at every level. We all have our things to deal with-I can't say how much I admire the ones with kids who have to keep up the positive front all the time. If I feel like a sour-puss whiner at home I can do it because the only ones to hear it are the dog and cat. LOve you people-hope everybody has a great weekend
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colodisneylover: I had my mapping yesterday for rads, and it was similarly immodest. They said to just undress and hop on the table. Then I spent an hour laying there topless with my arm over my head, freezing! When I went to get the CT, the room was even colder, so when she told me not to move, I answered that I couldn't control my shivering.
Silia: almost there. we're still cheering you on!
lilylady: I feel the same way about these boards. It has been a lifesaver for me to have so many supportive women who just understand it all. I have to say, though, when everyone wonders how I do it with young kids, I always respond that I don't really have a choice; we make do with what we're given. But I do think the kids keep me so busy that I don't have time to fret over the bc too much. I haven't had too many pity parties with myself. On the other hand, sometimes I would LOVE just an hour to myself...with NO interruptions!
pasmith and penny: I wasn't really given a choice about pre- or post-surgery for chemo. Don't know why. It was a given that surgery was first. And I see that one of you is node-positive and one node-negative. I always figured my positive nodes drove the process.
mdg: so sorry about the rash! I so wish it would clear up.
I am definitely sprouting hair, but I would love to see some eyebrows!
penny: I have a presentation next week, the day before my rads. Did you decide if you are going to wear the wig? I think I will just wear a head covering and let people deal with their own emotions about it. I got marked up for rads yesterday and will probably have them still by the time of my conference presentation, and unfortunately they go onto my neck! Hard to cover. So far, most people think it's stitches-- like I got knifed in a fight? Now the lack of hair and the knife fight will really keep them wondering!
All have a great weekend. I look forward to more of you finishing up next week.
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The bs just called me with the pathology report from my lumpectomy and I do not have clear margins on the skin side. The news doesn't make me too happy. I have to see her (the bs) next Wed. for a post-op visit and she said at that time she'd discuss when would be a good time for another surgery. Soon I hope, I do want to get this part of the whole f-ing thing out of the way. I'm sorry to be so blunt, but sometimes it seems there's no end to all this crap.
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Mrs. M, I am so sorry to hear that they didn't get good margins for you. That is so frustrating. I hope you can get your surgery soon. Be as blunt as you need to be.
In honor of all on the thread that are Post F&^%in Chemo and especially Mrs. M who deserves to have this whole F%$#in thing out of the way, how about playing F$#$in Perfect by Pink on the Juke Box.
Fuckin' Perfect Lyrics
Made a wrong turn
Once or twice
Dug my way out
Blood and fire
Bad decisions
That's alright
Welcome to my silly life
Mistreated
Misplaced
Misunderstood
Miss knowing it's all good
It didnt slow me down.
Mistaking
Always second guessing
Underestimating
Look I'm still around
Pretty, pretty please
Dont you ever, ever feel
Like you're less than
Fucking perfect
Pretty, pretty please
If you ever, ever feel
Like you're nothing
You're fucking perfect to me
You're so mean
When you talk
About yourself, you were wrong
Change the voices in your head
Make them like you instead
So complicated
Look how we all make it
Filled with so much hatred
Such a tired game
It's enough
I've done all I can think of
Chased down all my demons
I've seen you do the same
Oh
Pretty, pretty please
Dont you ever, ever feel
Like you're less than
Fucking perfect
Pretty, pretty please
If you ever, ever feel
Like you're nothing
You're fucking perfect to me
The whole worlds scared
So I swallow the fear
The only thing I should be drinking
Is an ice cold beer
So cool in line
And we try, try, try
But we try too hard
http://www.elyricsworld.com/fuckin'_perfect_lyrics_pink.html
And it's a waste of my time
Done looking for the critics
Cause they're everywhere
They don't like my jeans
They don't get my hair
Exchange ourselves
And we do it all the time
Why do we do that?
Why do I do that?
Why do I do that?
Yeeeeaaaahhh
Oooooooh
Oh baby pretty please
Pretty, pretty please
Dont you ever feel
Like you're less than
Fucking perfect
Pretty, pretty please
If you ever, ever feel
Like you're nothing
You're fucking perfect to me
You're perfect, you're perfect
Pretty, pretty please
If you ever, ever feel
Like you're nothing
You're fucking perfect to me0 -
Sorry Mrs. M. that your margins were not clear. I hope you get a surgery date soon. No need to apologize for being blunt. It's good to say it how it really feels.
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Maxine - there certainly is no modesty in having RADS is there. At least the room I am in is very warm so I am not freezing like you, but there is something slightly unreal about lying there with your arms up in cradles and your chest bare while a couple of little men lean over you marking green felt tip pen on your boobs. Mine are very sweet and quite apologetic, and after all the marking up they put a cloth on my left boob before they leave to do the rads on the right scar area. I am kind of used to them now aftr 2 weeks and we chat about all sorts while they do their stuff.
Interesting that you have to keep the marks, during my initial one they marked me up, then tattooed me, but I was told I could then wipe off the marks. I should check with them that they have to stay. I really haven't decided on the wig v the headscarf yet for the presentation. Good luck with yours, mine is on the 26th and I am desperately writing it today.
Mrs M - so sorry the margins aren't clear - so annoying to have to have more surgery.
I have a little fuzz of hair growing - but am afraid it looks white.
Lilylady - before this I never realised how time consuming being sick is - I guess we should be happy there are so many things they can do, but it does take up so much time out of our lives doesn't it. Hang in there. Don't worry about the MX, I had the right off in Jan and will have left off later, but to be honest surgery is so much easier than chemo, same seems to be true of Rads (so far).
Kay - I will have this verse of the Pink song as my own - perfect, very Aussie!
The whole worlds scared
So I swallow the fear
The only thing I should be drinking
Is an ice cold beerHave a good weekend everyone, the sun is shining this morning - so lucky to have the support this group brings.
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Good luck to all of you ladies who are going through or getting ready to go through rads. I didn't have to have rads so i can't say i know what you are going through but i do wish you all the best.
Pennycookson & MaxineO - I hope both of your presentations goes well.
Kymn - Hope you are feeling better today.
TheDevineMrsM - Iam sorry to hear about the pathology report...another surgery..that sucks, but surgery will be worth it in the end.
Lilylady - It seems the appointments, labs etc., are endless once you find out you have a pending surgery. I had my left breast removed in Feb. It wasn't as bad as i expected it to be, however i am looking forward to my exchange surgery which is scheduled August 9th.
Kay1963 - Thanks for the song.
Well sisters have a great weekend with no SE.
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While I have not posted in a few weeks I have tried to keep up with everyone.
Divine - So sorry to hear about the margins. This really does suck.
Jules - Great news on your pathology report - Congrats.
Lilylady - Glad you had a great trip. Makes me envious - I moved to CA jsut 3 years ago and have not made even one good friend here so I have really no one (including old friends) about the BC so it must be great to have that kind of release. I guess the upside is that no one makes stupid comments and my wig is so close to my own hair style that no one even notices. This post is the only way to let it all out for me and I feel that you are all my friends.
Rads - Completed number 13 out of 30 today with no real side effects other than being slightly tired although skin on sternum looks a little red/blistered today but with 2 days off hopefully it will clear.
HAIR - Growing back fast. Evebrows very sparse just a week ago and now seems to be coming in fast (as is facial/mustache peach fuzzz). I used Latisse on eyebrows throughout chemo but just ended up with 2 very long hairs on brows (LOL). I have very long and curly eyelashed and all but 1 or 2 have fallen out so with mascara looks a hoot - I just go without and use eyeliner. After losing hair on head the rest comes easy.
Hope we all keep up. Is anyone posting on rads threads - hope we just also keep up here.
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Made appt for early August for first RAD consultation even though I'm not done with chemo until August 11th..my ONC made it sound like it was my choice when to start RAD after chemo but the RAD nurse told me they want all the chemo out of your system first (apparently causes more skin reactions if chemo is in your system) so will probably be starting about Sept.1st. Kind of anxious about this new part of treatment but it sounds like the rest of you are surviving !!! Having the treatments at the hospital I work at so it will be convenient although I hope I can be as covered up as possible in the waiting room ! Hope you all have a great weekend....we are headed up to the North Shore of Lake Superior...good timing as it is supposed to be 100 + degrees in the Twin Cities....
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