August 2010...anyone starting chemo besides me?!
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Lisa thats sounded awesome!!!! Early happy anniversary to y'all!!!!!0
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I haven't come on here to complain much but I gotta ask you ladies: does anyone else feel like they cannot take another minute of this? I have 3 more Taxols to go and will end on 12/1. I'm not even going to discuss the 9th reconstructive surgery I need or the posibility of radiation which the jury is still out on.
More so than the physical stuff, does anyone else feel just psychotic from this? Has anyone stood in a drug store aisle with no idea why they were there? Been weepy and nuts over the slightest things? So tired that it feels like you are walking around in a coma? Like everyone and everything, no matter how well intended annoys the crap out of you? That staring in the mirror looking for new hair growth is now a hobby? That you are half the size you were and your pants are falling off you in the street? There aren't enough belt holes in the belt to help? The anxiety-meds help but make you even more exhausted if that's possible? That you are sort of in a crazed dream state and all you want to do is either sleep or eat pizza?
Does any of this resonate or am I losing my mind? And don't even get me started on the wig. I can't stand another second of it. Actually I can't stand another minute of anything at all.
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Zachsmom: Yes.
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ZACHMOM,
You are not losing your mind...I am overwhelmed as well...
I WISH I WAS LOSING WEIGHT THOUGH...
I WANT IT TO END TODAY...
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Me too!
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Zachsmom: yes, yes, yes! This week I am ½ way done with chemo then after that I have reconstruction. Oh, wait, actually I have a TE that I think ruptured so I will have to get a new TE then get them puffed up then recon and then rads. It is a long, arduous road. Also, I hate to admit this but one day after my last chemo my sleep was choppy all night then I got up at 9:30, had my pills and a Boost and then went back to bed until 3:45. I was so disgusted to think I had slept half the day away. It is almost embarrassing to admit it. It all takes a toll. I agree with you and you are not losing your mind.
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Oh LizzyMack please don't be disgusted about getting the sleep you needed. During the three year depression I had I slept very odd hours. Sometimes going to sleep at 11 AM and sleeping until 9 PM. I felt so bad about it and wish now I hadn't added shame to my already existing depression. With our current illness our sleep is going to be messed up and is just a symtom of our illness not a statement about our character.
Peace
GInger
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This week instead of a poem we are going to enjoy the lyrics to Billy Joel's "Vienna." The reason I chose this is because of the reason Billy Joel wrote the song which is in Vienna elders in society have a place in society where they feel useful, can work and can still be a productive member of society. When the word "juvenile" is used it is not in the traditional sense. It is intended to connote crossroads at any age and it's meaning is ultimately to take it easy. Plus it is a grrrreat song!
Slow down, you crazy child
you're so ambitious for a juvenile
But then if you're so smart, tell me
Why are you still so afraid?
Where's the fire, what's the hurry about?
You'd better cool it off before you burn it out
You've got so much to do and
Only so many hours in a day
But you know that when the truth is told..
That you can get what you want or you get old
You're gonna kick off before you even
Get halfway through
When will you realize, Vienna waits for you?
Slow down, you're doing fine
You can't be everything you want to be
Before your time
Although it's so romantic on the borderline tonight
Tonight,...
Too bad but it's the life you lead
you're so ahead of yourself that you forgot what you need
Though you can see when you're wrong, you know
You can't always see when you're right. you're right
You've got your passion, you've got your pride
but don't you know that only fools are satisfied?
Dream on, but don't imagine they'll all come true
When will you realize, Vienna waits for you?
Slow down, you crazy child
and take the phone off the hook and disappear for awhile
it's all right, you can afford to lose a day or two
When will you realize,..Vienna waits for you?
And you know that when the truth is told
that you can get what you want or you can just get old
You're gonna kick off before you even get half through
Why don't you realize,. Vienna waits for you
When will you realize, Vienna waits for you?0 -
Ginger: thank you...chemo takes so much out of me. I was so embarrassed I didn't tell anyone. I know the rest is good but geez...I hope I am not slipping into a coma!0
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Zachs Mom- yup totally feel this way! i am counting down to the 4th cuz i know i'll only have 3 more tx left and i will be over the hill! Lately it seems my kids have been doing things to intentionally irratate me, like dump the contents of the vacuum onto the freshly cleaned carpet! I just looked at her and started laughing LOL inside steam was coming off my ears but outside i laughed and then sent kiddos to bed! Thank goodness there is school tomorrow
Lizzy Love the lyrics! Great choice!
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zachsmom - YES YES YES! Today was that day. I woke up and told my DH that I've had it. I called my mom and told HER I've had it. I don't wanna do it anymore. I don't want to do chemo tomorrow nor the next two after that. I don't care that it will be done on November 22 - I don't - it seems like a lifetime away; an eternity. I feel like I cannot do it anymore. I have wounds that are taking forever to heal, I'm still clearing my throat from a cold a month ago - nothing's right with my body. It's rebelling against the chemo and I've had it.....
My aunt called today - she had chemo for ovarian cancer (very early) 10 years ago. She encouraged me to plow through, head down and that it won't always be like this! It was so helpful to talk to her and compare experiences.
I just took my premeds for chemo --the benadryl's kicking in............
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Ok, next question:
How many of you are working through this? I'm on intermittent disability so I'm out the day of my chemo, then usually the next two days. I'm also out whatever part of the day involves shots, bloodwork, doctor appointments, etc. I have had numerous problems with my idiot bosses (though HR says they are on a short leash and I do get the feeling they are a little afraid of me - a lawyer who is well versed in disability, ADA protected and over 40 is toxic).
I have more than enough disability time at full pay to just ride this out. Thing is, I can't decide what's more depressing. Being home, aware of the fact that I'm a full time cancer patient or trying to deal with a work situation that was very stressful BEFORE all of this began. I'm really at a loss.
For those of you employed outside the home - what is your story?
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Zachsmom: I am single, was engaged twice and walked away from them both, have a career and am currently on disability. I am going to stay out of work for however long it takes. I am lucky I made some smart investments and have the luxury of taking this time off. My feeling was it would be precarious to stay in a stressful work situation while I attempt to rid myself of a disease that no one can confirm is not stress-induced in some way. I just need to rest and relax. I don't consider myself a full-time cancer patient but I do consider myself smart enough to know when to fold. That famous song says we need to 'know when to hold up, know when to fold up, know when to walk away and know when to run.' We have to take heed. I am self-supporting so I had to consider a lot of things and, in the end, this made sense for me. I am really happy I made the choice but it is a choice.
Due to your career and knowledge of disability and also having bc does make you a lethal combination for an employer but I would also remind you that we must choose our battles. If you feel you need the time and can take it I totally encourage you to do so. We need rest now, to revisit a slower pace and the woman typing this was a trader and broker on Wall St. I know the pace that kills and sometimes you really have to disengage to be able to reconnect in a healthy, powerful manner. You know all too well what the burning the candle at both ends garners. Don't be concerned that you are babying yourself or taking it easy. Believe me, if you are even questioning the situation the time might have come for you to take time off.
I wish you the best and everything works out. You will see
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Hi all,
ZachsMom, it's funny, I'm actually done chemo and I've had a dip in mood since finishing it. I was happy for a bit, but then it hit me. NOT DONE. Not by a long shot, 5 weeks of daily Rads followed by 5 years of Tamoxifen, which I am thoroughly creeped out by. Finishing chemo felt like a false finish. It's not over, it's not going to be over for the next few years. And I am going crazy. I don't feel like myself, a friend even said, "You're not as witty and funny as you used to be." And it's true, I'm not. I'm a slower, sweatier, somewhat foggier version of myself. I want me back.
All- I'm sorry I've been so absent this last week. I've been hiding my head in the sand trying to pretend I don't have cancer. Needless to say it hasn't worked. But I'm sorry, I feel like by not participating in the conversation I may not have supported you in some of the ways that I could have. So sorry about being selfish. I do have cancer and you've been my lifeline. I"m pulling my head out of the sand.
Next Monday- Radiation begins. Will keep you informed. SPTMM sorry if forgot to mention the marker on boobs thing! I'll try to be more descriptive, especially my first appt so that y'all know what's coming down the pipes.
Sleep tight friends. XO
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Oh yeah, p.s. Am not working at all. I am lucky to have great employer that considers this a non-negotiable and told me to go home and get better. I have almost full pay, about 90% so this was an easy decision. And work has been absolutely incredible in their support of me. So for me this has been a huge blessing with no stresses added.
And Texas- Man am I rooting for you to get your fancy new appt. Will send up a prayer your way. You're the most positive person and I'm constantly in awe of your posts. You deserve every good thing that comes your way.
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I am so thankful for this board, and for all you who contribute. It is so reassuring to see, in print, the many thoughts and worries I have and to know others are having them too. Thanks so much.
I had Taxotere and Carboplatin last Monday. I thought it was going to be better, but in fact this round I have had more just overt nausea and cannot find foods that really sooth. Everything is too sweet, salty, greasy. It just combines with this God Awful taste in my mouth, and makes it worse. And I hurt in my bones worse, and am so, so tired. I think many of us must be getting the cumulative effects. I thought just because I am now 4 out of 6, it would seem easier--be better, but it's not. I too just wish I could walk away from all this, I am so fed up. I am so tired of being sick, and although I have only "2 to go" (and the cheerleading has begun), at this particular moment, it doesn't help a bit.
I am on medical leave. I drew my last paid time off this week. I will be paying 102% of my health insurance out of pocket this payroll period. It distresses me, but I was not prepared to jump into and try to hold a job as detailed and demanding as mine. We are audited without mercy, and must hold a 95/95 accuracy and production stat. If I had 3 more weeks of medical leave I could get all my chemotherapy treatments done. As it is, I will try to return to work intermittently to build up enough time off to get me through that last chemo week. If I do not return to work by November 31, I will lose my job. So, all my efforts will be toward that. How I would like to be able to just sit back and care for myself, do all my chemos, and get my reconstruction and get this damn port out.....but it just doesn't work that way.
And one more thing, while I'm on this jag, in the onc clinic a couple of weeks ago, I was telling the head nurse how bad I had felt. "It sucks", I said. This must have been one of the most delicate southern ladies I have ever had the misfortune to meet, because, she says, "you know, saying it sucks can have many meanings, some not so nice, so I just say "it vaccumns"..................I didn't know whether to laugh, cry or slap her......she hasn't had it, and believe me.....it sucks.
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DebJ: have your exorcisms and use your words...it is good for the soul!0
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DebJ - You are absolutely right - It SUCKS!
LizzyMack - I can't believe you used that song for the poem this week. That song is one of my favorites ever. I won't go into all the details, because it is a long and complicated story, but suffice it to say, that song got me through many, many hard times. And it was true, Vienna was waiting for me, and I mean that literally. :-) Thanks for the reminder.
Working - I work freelance as an actor/singer. It ends up being really stressful, because I try to fit in absolutely as much as I can into every week, and every time I finish something, the stress starts about what is going to be my next gig. After I was diagnosed, I promised myself that I would only do 1 thing at a time, which means rehearsing 1 show OR performing 1 show OR doing commercial auditions OR profesionall Christmas caroling OR working as a professional patient at the medical schools. At least until rads is over. Then I will re-evaluate. It has been both a blessing and a curse as I'm happy to have the time to be sick, now that the show is over. I don't feel like I am letting anyone down when I am sick. But at the same time, I watch my friends, who are also all performers, go out and do interesting work and take interesting auditions, and I get envious. I know it would be impossible for me to be running around like normal at this point, though, so I am trying to appreciate this time as much as I can.
ZachsMom - My hat's off to you for working full time through this. I wish I could relieve some of the burden for you. I can't imagine how stressful it would be to have to get up and do my daily routine, especially the first 10 days after chemo. I admire you.
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I start Taxol tomorrow. My Doc appt is at 4 and chemo at 5:30, not by choice. I take my Dexamethasone at 5:30 Am then 11:30 AM then 3:30 PM. I wasnt told to take anything else to prep.
Sweeny, I appreciate your willingness to give us the scoop on rads. I have been wondering if the set up appointment hurts? Silly question but I am unsure what they do there and how they do it. How long it takes and all that sort of thing. Thanks for whenever you want to share.
Ginger
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Hi everyone. I've not posted in a while. But I have been keeping up with reading the posts. I guess I'm a poster turned lurker.
About Neulasta - My onc will give it to me my last tx. He mentioned that last time. But he did reduce the amount I get since that is what I complain the most about. He reduced it from 6 to 4. So maybe if your onc insists you need the last one, you can suggest reducing the quantity. He did that last time for me and I felt equally bad on Thursday, but the bone aches were over quicker and I was much better on Friday. He told me that if reducing it didn't help, that then he'd say "Well, you've only got one left". = I get one this time too.
About being fed up and ready for this to be gone from my life. Feeling like you can't go one more day like this - absolutely
About work - I have to say that my work situation has been phenomenal. I work from home which helps in some ways (I don't have to face my co-workers looking like this), is hard in others (I never close the door and walk out of "work"). But my employers have also told me to do whatever I need to do to get well. I took 3.5 weeks of sick leave after surgery and for now I've been taking the day of chemo off and usually one other day that week. Work helps to distract me and gives me something else to think about, people to talk to. But I've also found myself getting really angry at people. I have no patience. I hold it in though and don't let it show.
I have my last tx tomorrow. I know I still have a long road ahead of me, but I am extremely anxious to get this part over with.
Has anyone been told they've become anemic? My levels dropped to where I was close to needing a transfusion. I'm hoping I can make it through this next time without that happening. My arm is so sore from being poked. I had been eating anything high in iron like crazy, but then the nurse told me that might not even help because the chemo is just too strong.
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Hi All...
I DO NOT WANT TO GO TO MY CHEMOTHERAPY TOMORROW...UUUGGGHHH...
IT IS CRAZY... I FEEL OK NOW... HOWEVER, I WILL BE SICK TOMORROW...
UUUGGGHHH...
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Big hugs Sohard! I ABSOLUTELY know what you mean! I wish I could just fly away from it all!
I'm going for Taxol 2 today - in about 20 minutes.....all the premeds have already given me hot flashes and a headache now.... 0 -
Best wishes Sohard and Cal! I'll be thinking of you today.0
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OK so on this "easy" regime of taxotere I am hurting from my head (headache) to my toes (neropathy pain in both big toes). Knees, ankles, port area, chest, shoulders, neck, well you get the picture. plus i just started feeling nausea so gonna go take meds. Newlasta shot this afternoon, yeah!
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Good Morning Everyone!
Sweeney: I hope you know I was just joking about forgetting the drawing part, it was just my way of highlighting what I thought was the most hysterical and surreal part of the whole process! I mean, really, radiation is so high tech but they have to draw on you with a sharpie! Seems completely primitive with respect to everything else. I start on Monday too, so we can compare notes and keep the girls informed as we go!
Working: As I have said before, I work full-time in an office and part-time at home and have worked throughout the whole process, taking a couple of days off for surgery, ½ day on chemo day, and I missed two days during chemo when I just could not go to work. I do this out of financial necessity. I have to work, and couldn't afford to take off (although I have decreased the amount of work I do at my second job). I wish I could have taken some time off, but am glad that I had a reason to get up every day, because some days I felt like crap until I got up, got dressed, and got out. Just getting out of the house made me feel better. It would have been nice however to be able to take 2-3 days off each chemo cycle. That being said, I often get mad that my life situation is such that I can't even get cancer and have some time off to myself!! It really pisses me off!!! Throughout this whole thing I still have to be mom who takes care of everyone and everything and the breadwinner!! I am soooooo done with taking care of everyone and me being second, even with cancer!
Yes, cancer SUCKS!!!!!
Debbi
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P.S. Hope everything goes well today for you, sohard and calam!
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Good morning chemosabes-
Lisasinglem: I LOVE that song! It is one of my favorites of all time as well. I am a little type A and never feel like I am doing enough so that song tempers me when I definitely need it!
Calamtykel: headaches! Mine is here as well...about to take my roids...here we go!
Sohardbnme: It is me and you tomorrow, kid! I can safely say I cannot wait until this chemo is over.
Activity: as I stated, I never felt like I was doing enough and then bc gets here and I am devastated. In the end I think, and it is awful to say, bc has given me a much-needed, life-saving break. I am not going to back to work for a long time. I am going to take care of me.
More music therapy: one of my favorites from the 80's "Don't Worry, Be Happy"...I can hear you all whistling now!!!!!!!!!!
I hope you all have a good day and take my music therapy and sing these songs right through the holidays! Speaking of holidays, I put up my Christmas tree the first weekend in November as I love the lights and combined with the fireplace, it is just so festive. If you like holiday lights, I encourage you all to put up your decorations early also!
Good day-
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Cancer so sucks!!!!!
Radiation - thanks for keeping us informed, that is up next on my plate too.
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I am with you Lizzy and Sohard tomorrow. Start my steroids tonight. I have a total of 50mg in two days. I like that song 'I get knocked down, but I get up again....."0
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Lizzy- don't forget to tell us about your "roidmares"!
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