I've changed names to initials and altered children's names. Unfortunately, some of the comments got cut off, but you still get the gist of it.
One small irony is that I've titled this post "Sh*t Survivors Say" ;however, we don't talk about shit at all. Normally,get any two cancer patients or survivors together and the talk will turn to shit...too much, too little, too soft, too hard...
Actually, this really should be called "Reality Bites."
- M I had such a radically different experience with AC...really...go figure (not that I would ever in a million years want to do it again...)
Monday, February 27 at 5:11pm (7 hours ago) · LikeReply
*
G i did dose dense the entire trip. it was a nightmare because just as you begin to feel the small inkling of normal, wham. all over again. after the first treatment, i seriously wondered how on earth i was going to make it though to the end.
Monday, February 27 at 5:51pm (7 hours ago) · LikeReply
*
dhs I did six rounds of carboplatin, taxotere, herceptin, then surgery,then dose dense AC. I worked straight through the first 6 rounds, with a little (lot) of help from my friends. No way could I have worked through the AC. No. Way.
Monday, February 27 at 8:25pm (4 hours ago) · LikeReply
*
M I did dose dense AC---and was so overwhelmed at how well I did, that I went back to work when I did "T" (taxotere)...which laid me out....after taxotere, I did a year and a half of herceptin, then radiation...it all sucks. but for me, taxotere sucked most of all...it ate me up...
Monday, February 27 at 8:42pm (4 hours ago) · LikeReply
dhs taxotere was SO painful. I swear my joints are much 'older' now. Ihave no spring, no flexibility, lots more grinding. I didn't have that before. I was no hoppy bunny, but I didn't move like I do now, that's for sure.
Monday, February 27 at 8:49pm (4 hours ago) · LikeReply
M I don't want to click *like*, but I hear you dawn...I'm there...taxotere did me in...I remember whimpering, -- spontaneously-- stepping from the street up to the sidewalk...that was the time when jude missed almost 3 months of school, and we laid on the fold-out bed watching re-runs of everyone loves raymond...funny--i could have worked through the AC---but was utterly unable to work through the taxotere--though I tried...stupidly...
Monday, February 27 at 9:09pm (3 hours ago) · LikeReply
G i couldn't have worked through any of it. the a/c made me feel like i was in an alternate universe, all the time. i didn't get taxotere, i had taxol, and the first three days, i would just eat codeine like candy and sleep through the pain. i still have some bouts of neuropathy from it.
Monday, February 27 at 10:31pm (2 hours ago) · LikeReply
M @G ... taxotere is a sibling of Taxol... and, btw, my neuropathy has never ever went away...and it will be 6 years come april since diagnosis...whatever...
Monday, February 27 at 10:36pm (2 hours ago) · LikeReply
G i was 7 years from diagnosis in oct '11. that seems like a long way away, but it seems like yesterday at the same time. the chemo brain after effects frustrated me, and i have only recently come to accept that i am just not going to remember certain things and that is all there is to it...but.... i'm not sure if i'm just getting used to it, or it's getting better, but it doesn't bother me as much as it used to.
Monday, February 27 at 10:46pm (2 hours ago) · LikeReply
G what does bother me is getting freaked out by new things. i can't get a simple hematoma, i have to have surgery and pathology. today i just had a biopsy done on a mysterious lesion on my skin on my lower ribcage. those things take a toll on me far worse than the neuropathy or chemo brain because i become frozen with fear and worry my kids won't have a mother....and the stress of that is unbearable...
Monday, February 27 at 10:50pm (2 hours ago) · Like ·
1Reply
M
@G...I am right with you...and I don't know how to deal with the level of....fear...I live with...it's awful...on one hand, I don't want another doctor to ever put their hands on me again ... EVER ...but on the other, my son is just 13,...See More
Monday, February 27 at 10:54pm (2 hours ago) · LikeReply
G yup. no scratch, bruise, bump or scab will ever look the same to me. i often wonder how many years out will i be when i finally give up being scared of the boogeyman.
Monday, February 27 at 11:00pm (about an hour ago) · LikeReply
M @G I know I have to find a way... I just don't know how...peace to you sister... from the bottom of my heart...
Monday, February 27 at 11:09pm (about an hour ago) · LikeReply
dhs
funny how it all affects everyone differently. I have neuropathy in my feet pretty significantly. It started the first crash day after infusion #1. And slightly in the tips of my fingers (I can't tell the difference between certain fabri...See More
Monday, February 27 at 11:10pm (about an hour ago) · LikeReply
G peace to you too @M. somehow, it helps to know that i'm not the only one.
Monday, February 27 at 11:11pm (about an hour ago) · LikeReply
M @Dhs...I have both too (fingertips and feet...
Monday, February 27 at 11:11pm (about an hour ago) · LikeReply
dhs G: what bothers me the most right now about chemo brain is (a) being dumb. the speculation is that I lost 10-15 IQ points, which is pretty significant when you add in the slower processing, the increased adhd and poor executive functioning.....I simply am unable to multitask. Strattera has helped quite a bit as has ADHD coaching and adjusting my life. I can no longer be spontaneous.
Monday, February 27 at 11:13pm (about an hour ago) · LikeReply
M @G...this is the first time I ever had an honest, real exchange with an endurer...I remember finding websites, and email lists....but it was neverr honest...I feel better too :) really...
Monday, February 27 at 11:14pm (about an hour ago) · Like ·
1Reply
G i don't know how they pick between taxol and taxotere. everyone i know who had taxotere has told me the same thing about the long term neuropathy, their fingernails falling out and coming in differently etc. while the bone pain was excruciating, i don't think the long term effects of taxol are quite as severe.
Monday, February 27 at 11:14pm (about an hour ago) · LikeReply
dhs Yes, G. Precisely. And I know too many people who have died and while I don't fear death, I fear dying slowly. Cancer doesn't make it easy. I don't want my kids to remember me slowly changing, slowly weakening, getting sicker and sicker, drifting off painfully....
Monday, February 27 at 11:15pm (about an hour ago) · LikeReply
dhs there's a lot written about PTSD in cancer survivors and in their care takers.
Monday, February 27 at 11:16pm (about an hour ago) · LikeReply
M
@G...I don't know either...my fingernails fell out; the bone pain was ...exquisite...and the steroids I got to conteract the effects turned me into a lunatic...which was unacceptable...my son then was just 8, and he was afraid of me, an...See More
Monday, February 27 at 11:18pm (about an hour ago) · LikeReply
G dhs i know there is, and there is quite a bit of support out there, but when i'm in a good place, i don't feel like revisiting the horror again. then shit happens, and things are getting biopsied, or sent off to pathology, and there's the boogeyman.
Monday, February 27 at 11:20pm (about an hour ago) · LikeReply
M @D... cancer is a trauma...I KNOW I have PTSD... long before the cancer; I was dx'ed 2 years to the day that I found my husband dead... I've been writing alot...ots of things distract me...but whenever I go to the doc, I have flashbacks...it
Monday, February 27 at 11:20pm (about an hour ago) · LikeReply
M it's not good...
Monday, February 27 at 11:21pm (about an hour ago) · LikeReply
G my daughter was 1 when i was in treatment, so my mother moved in with us and became me for 7 months. i did a lot of lying around in bed with her, napping and watching tv. we didn't even have tv before then, after i was diagnosed, my husband came home with a new tv and told me the satellite guy would show up and hook it all up so i didn't go out of my mind. smart guy, i think it saved everyone's sanity~
Monday, February 27 at 11:23pm (about an hour ago) · LikeReply
dhs My nails didn't fall out, but they aren't the same. Very slow growing and very brittle, hence constant infections in my big toes and two surgeries since Thanksgiving to fix it, which isn't working and I fear my appointment tomorrow. I've had 10 rounds of antibiotics since July.
Monday, February 27 at 11:26pm (about an hour ago) · LikeReply
M I'm sure it did, G... I know when I watch a Ray now, it feels like a friend...and I have NEVER felt that way about a tv show...
Monday, February 27 at 11:26pm (about an hour ago) · LikeReply
G the smell of the handsoap at duke makes me feel like throwing up. it's not an unpleasant smell, it's just that i brings back memories of lying in that chair.
Monday, February 27 at 11:26pm (about an hour ago) · LikeReply
dhs I watched every single hoarders and Law and Order episode. I still thrive on mindless tv....episode after episode of NCIS and Criminal Minds. I really have a hard time watching movies. Oh, that's something else that chemo took....I have HUGE holes in my memory. Many things are just **poof** gone.
Monday, February 27 at 11:28pm (about an hour ago) · LikeReply
dhs I freaked out going to the dentist....the chair was just that much too similar.
Monday, February 27 at 11:28pm (about an hour ago) · LikeReply
G yeah, that is so weird how things just went away.
Monday, February 27 at 11:29pm (about an hour ago) · LikeReply
dhs my kids are always asking, "Do you remember when we...." and I have absolutely NO memory. It's like certain things just don't exist. And I don't recognize people any more.
Monday, February 27 at 11:30pm (about an hour ago) · LikeReply
G when i was in treatment, i could not watch anything about criminals, or anything with any evil content. i actually watched american idol, the entire season that year. it had to be mindless, and devoid of negativity.
Monday, February 27 at 11:30pm (about an hour ago) · LikeReply
G when something like cops would come on, i'd get very anxious and change the channel. i equated evil people to cancer i think!
Monday, February 27 at 11:32pm (about an hour ago) · LikeReply
dhs
I think one of the hardest parts about breast cancer in particular is that we are supposed to be so upbeat, so joyful, so certain that what we are doing with our lives is going to save us. But in truth, it's a crap shoot. BC is treated in...See More
Monday, February 27 at 11:33pm (about an hour ago) · Like ·
2Reply
M
I don't even WANT to talk about the dentist... and yes, D, I am forgetful now, and not as smart, I struggle to find words....and that's all since chemo...and yes, D, Joe asks me the same thing..."don't you remember when we went to......See More
Monday, February 27 at 11:33pm (about an hour ago) · Like ·
1Reply
dhs the hardest part about not being smart is that it is so limiting. I'd love to do some coursework, to start taking my career in a different direction, but I don't think I'm smart enough to do it, and work, and deal with family, etc. I can barely handle the job I'm expert at any more.
Monday, February 27 at 11:36pm (about an hour ago) · LikeReply
G
i know people mean well, but when they ask me 'you're ok now though, right?' i almost feel like they are scared of catching it, or if i'm not alright, that means they might now be alright, or if i'm not alright, that it's going to be bad fo...See More
Monday, February 27 at 11:37pm (about an hour ago) · LikeReply
dhs I've had a cold for the last eternity and the post nasal drip is very reminiscent of the sensation I'd get with the one chemo drug. I've woken up several nights in the past month with nightmares and sweats flashing back to being in the chair.
Monday, February 27 at 11:38pm (about an hour ago) · LikeReply
G
dhs i've found that starting this new business, doing something i've never done before has been a good challenge for me. it has made me stretch beyond what i thought were my limits. in my old field of any expertise, i felt out of th...See More
Monday, February 27 at 11:40pm (about an hour ago) · LikeReply
dhs There really is no screening for us. NED is the best we get. No Evidence. But what does that mean? That could change in a matter of hours, I guess. If a PET shows up a hot spot, would it ever spread? who knows.....
Monday, February 27 at 11:41pm (about an hour ago) · LikeReply
dhs Yeh, if I thought I could do one thing, but I'll always have to do what I do right now full time.
Monday, February 27 at 11:43pm (about an hour ago) · LikeReply
G yes, i can see that.
Monday, February 27 at 11:44pm (about an hour ago) · LikeReply
dhs but even more is the sadness for others who are mets....when those two bloggers died a few weeks ago, it was horrible.
Monday, February 27 at 11:46pm (about an hour ago) · LikeReply
G
i agree. i have had to stop going to any kind of support group. my 'mentor' person from the american cancer society died, and it put me in such a state of fear and grief that i couldn't sit and listen to women talk about the terrible thin...See More
Monday, February 27 at 11:49pm (about an hour ago) · LikeReply
dhs
I go to this exercise class and everyone there is all fuzzy and pink and they whisper so oddly about the one woman who has had a recurrence.....she also was diagnosed initially the second longest ago.....so, it's not that surprising that sh...See More
Monday, February 27 at 11:56pm (about an hour ago) · LikeReply
M
5 years was a magical number for me...until I hit 5 years...and nothing changed... what sucks for me now is that I am the age my mother was when she died of ovarian cancer (I was 18 then, and was with her when she died...) My son tells me...See More
12:00am (56 minutes ago) · LikeReply
G yeah, the cute pink thing was a mild annoyance to me, i kept my curmudgeonly thoughts to myself. turns out, it wasn't just me after all.
12:03am (53 minutes ago) · Like ·
1Reply
G i play the numbers game too @m, matching relatives dates to mine, as i my mother and her sister both had bc, but both died of other causes. i try not to, like it's bad juju or something....makes me feel like i'm a little nutty!!
12:04am (52 minutes ago) · LikeReply
dhs I should figure out a way to capture this convo to my blog
12:06am (50 minutes ago) · LikeReply
dhs call it Reality Bites
12:06am (50 minutes ago) · Like ·
2Reply
M
I'm so glad to be part of this conversation... the first real one I had re: bc, since, well...forever....I HATED the pink shit; hated the cheerfulness; in the chemo suite, where I went for 14 months, there was this HUGE brass plaqu..."To my...See More
12:17am (39 minutes ago) · Like ·
1Reply
G oh dear zeus. there was something like that in the radiation waiting room, it freaked me out, but then i thought the person who put it there had probably spent the last few months/years whatever in there waiting for their loved one to get treatment, and they had this whole different relationship with that space that i was having at that moment.....i hoped....
12:27am (29 minutes ago) · LikeReply
M you said Zeus!!! When my son broke his arm a couple of years ago, and we went to the doc, the doc said he ony needed to be in the cast for a month, and my son kissed the doc, the exclaimed THANK YOU ZEUS!!!
12:28am (28 minutes ago) · Unlike ·
2Reply
M
my son also said to my surgeon (I brought him to meet my surgeon prior to the operation, so he wouldn't be scared - he was in 2nd grade then) "Hey, you look like that guy...Jesus Christ".... my surgeon's name was Sheldon Feldman (he was the...See More
12:33am (23 minutes ago) · LikeReply
dhs So, if I can figure out a way to capture this, can I include your names in my blog....
12:34am (22 minutes ago) · LikeReply
M that's a yes from me... :)
12:35am (21 minutes ago) · LikeReply
G i'd prefer, mostly for my kids' privacy that you maybe just do my initials or something if you can. if you can't, then i'm not going to get all wigged out about it :)
12:56am (33 seconds ago) · LikeReply
dhs OK, I've still got to figure out how to capture it;)
