Has anyone started a forum for Chemo in Dec 2008?
Comments
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Cebula -- My new wig is a Raquel Welch that is a wind-blown, short to mid-length razor cut in shades of blonde. Very fun and pretty comfortable. I'll try to get a picture in the next few days and put it up so you can see the new me.
Brenny -- I missed the model with "eyebrow extentions". What will they think of next???
My hair is growing a little bit and is not so sparse, but it's really just fuzz that is getting thicker and longer. I'll take it though!
Taste buds are still gone and mouth tastes like metal. Anyone have trouble with their sense of smell? Last night I was getting ready for bed and would have sworn that I could smell human barff -- it was so terrible. My poor husband just looked at me, smiled, patted my shoulder and said "there's another thing to blame on the chemo!" The smell vanished fairly quickly, but it seemed totally real at the time,
Hope I'm not losing my mind.....
Bonnie
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I am curious how many of you have lost your brows and eyelashes. I still have mine although I can tell my eyebrows have thinned out. They look I've been getting them waxed but I haven't. The past few days I've noticed a few new ones popping up. My latest wig has bangs so if/when I lose them I can cover them up.
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I'm on day 8 after TC#4 and I think my brows and lashes are thinning. Ugh. I haven't had bangs since I was a little girl so I didn't get a wig with bangs. Guess I will be drawing in the brows if necessary. They are so thick usually that I have hopes that they won't completely fall out. I'm not as concerned with the lashes for some reason. I figure I can wear eyeliner or even false eyelashes if I'm really desperate.
Head hair, at least the few strands that stuck around, is about 1/2 inch long. I refuse to cut it. I will just wait until the space in between fills in. I check with a magnified mirror every day too. I know they say it may take 6-8 weeks for the new hair to sprout, but I can always hope.
Anyone cry daily? When I am alone in the shower, I just let it all out. I haven't mentioned it to my doc. I figure it's just my way of dealing with the emotions. I don't vent otherwise, not even to DH. I don't want to worry him anymore than he already is.
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I had heard that some people have problems with smell. I only have trouble with one smell...vanilla. It was my favorite smell before chemo and we had lots of air fresheners in that scent. One day I kept saying that I smelled something nasty. We looked all over. We cleaned out the frig and emptied the trash. Then I realized that it was the freshener that didn't smell right to me anymore. I went around the house and unplugged every one of them. I have not had a problem with any other smell.
It is day 5 after my tx and the fatigue has been really bad this time. I never really recovered my strength between treatments last time. This worries me because I have another treatment on March 12 and then my son gets married on March 29. I am worried about having the strength to do everything I need to do.
Pam
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My wig lady sells false eyebrows, as well as false eyelashes. I think I'll just continue to pencil mine in, and cover them with the bangs from the wig.
Had treatment #4 of Taxotere this morning. My oncologist commented that I'm having much more severe side effects than he usually sees. Gee, I like to excel but this is ridiculous! He is doubling my dosage of Decadron, and cut back on the Taxotere dosage. 5 more treatments to go -- let's hope they are uneventful.
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Apfuentes - I cry a lot too. I've always been sensitive but even more so now. I think getting thrown into menopause probably has a lot to do with it too! Unfortunately I don't limit my crying time to the shower. I try not to cry in front of my DBF too much because I know it makes him worry.
Last night there was a program on TV called "Defying the Odds, Stories of Hope". They were spotlighting a woman who was diagnosed with BC and she was telling her story. She was explaining her treatment options that she was given at time of DX. Some of the things they were saying were based on the opinion of her oncologist only. It really upset me because it made me start thinking about my situation and if I made the right surgery & treatment choices. I immediately turned it off. So I was really quiet when my boyfriend came home from work and he asked what was wrong and I immediately I started crying. At least with the internet we can choose what we want to read but when watching TV and thinking I'm watching a "Story of Hope", all it does is scare the crap out of me. Sorry, just had to vent.
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Surprisingly, I haven't cried much. I probably can count on my hands my episodes since dx which is odd because I'm usually a very emotional person. Altough I do lack quite a lot of patience right now. I'm exhausted from not sleeping well and then the menopause, I feel bad for my poor kids
Hubby is going back to day shift next week. I'm a bit scared, chemo week won't be so bad since my mom is flying in, I think it will be good for the kids to see him at night, but I'm really scared about radiations, they're only 4 & 5, can't take them with me, and with hubby at work, 33 tx will sure be a pain!As far my my eyelashes & brows, my left eye has a gap on top & bottom, the rest of the eyelashes might have thinned some but not much, it's just that gap.. arghh. My eyebrows have thinned quite a bit, my MIL says you can't tell, I have very thick eyebrows by nature, but I compared a before chemo picture last night and it's thinning alright! I pencil them in today, never done that before, it looked pertty good. Still 2 tx to go, we'll see what happens...
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What gripes me is when the media (including these special reports) gloss over what we, as breast cancer survivors, know to be far more intense and complicated treatment plans. When you think of chemo, for example, most people think it's about nausea and losing your hair. They don't know all of the other aches and pains we deal with. They say "women can get reconstruction" but they don't explain about tissue expanders, flap surgeries, etc.
Heck, most women don't even understand that there are different forms of breast cancer, and that with the different forms and stages come different outcomes. I'm stage 3B. When the media reports a 98% "cure rate" for breast cancer, they aren't talking about me. Yet I still have people quote this statistic to me, and wonder why I'm concerned about making lifestyle changes.
That's what I had an especially hard time dealing with at the beginning. I'm one who likes to know what to expect, and things that aren't well known just kept piling on. I wish people had greater access to a more complete story.
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Texas 357, you expressed my feelings better than I could have. The media likes a story and they abbreviate. But they do not understand the complicated treatment decision we have to make and like you I like to know what to expect....
Have a nice night my sisters. I am turning in early.
Mandy
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Texas - I totally agree with you. "we can get recnstruction" without explaining all the decisions and complications that entails. I just went and purchased my first bra for these new foobs - what an experience - I was exhausted by the time I was all done because I just can't get used to the the feeling and the look but I don't want these girls to end up down near my belly button in the future. I was always a camisole girl.
On a brighter note - I just enrolled in a Vet Tech program at my local community college. I am now a coed again at age 52. Just something I always wanted to do and I start this summer for 2 1/2 years!! Can't believe I did this but just wanted something to look forward to and bored with what I'm doing. My son and SO are so proud and now I'm scared to dissappoint them. But I am perfectionist so I'll tackle this to. Filling out a FAFSA for myself now - too funny.
Starting to feel like myself again but darn those brows - can't leave the house without pencilling them in and the lashes are thinner everyday! Have a good day all.
Bobbi
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Bobbi
what a wonderful thing you are doing .....
.all the best with your studies and your FAFSA forms!!!
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Good Morning Ladies,
I've been reading all the posts and can so relate! My eyebrows are very thin, the left is thinner than the right. I fill them in some days, and some days I don't! My eyelashes are all gone save for a few stray ones. I bought false eyelashes online, but didnt get the glue to go with them, so I haven't tried them yet. I'll get some this weekend. To be honest, I think losing my eyelashes was almost as bad as losing my hair. I guess because I always notice people's eyes, I think everyone is zeroing in on the "thin brows, no eye-lash" lady!
I bought a nice wig after tx #3 and have yet to wear it. It's cute, but I just can't bring myself to wear it. I guess for me its easier to wear the berets, scarves, caps etc. I feel so phony in the wig if that makes sense? (At least with the head covers everyone knows I don't have any hair.) I don't know maybe I'll try it this weekend. Is it better to wear in front of strangers at first or would it be better in front of you friends?
I'm with you on the smell issue. Some things make me want to gag. The smell of can dog food is awful! Fresh flowers can even set me off. My sense of smell seems to be extremely heightened now. Not necessarily a good thing!
I haven't been crying more lately, but I have been more "down" or depressed I guess. I also don't sleep well and have been having some really crazy/bizarre dreams. I have a prescription for Lorazipam(sp?) that I can take but I'm afraid I won't be able to get up to go to work in the morning.
Tomorrow is Round 1 with the Taxol. I'm rather anxious to see how it goes. I did pretty good with the A/C so I'm hoping my "lucky streak" continues.
I hope eveyone has a Happy Wednesday!
Cat
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Good morning Divas. I miss my Divas! It doesn't seem like this thread is as active as it once was. I guess a lot of us are through TXs now. 'That's a good thing though. I can't wait to be one of you. Anyway, I see my doctor today for blood work and a visit and then tomorrow is Taxol #3. I'm worried about the aches and pains again because I still haven't completely gotten over the SE's from #2 yet. But I have a plan and hope it works. I had another night of waking up with hotflashes last night. It's the most insane thing I've ever experienced. My head felt like it was on fire. After a minute or so it passed but it was really weird. It only happens once a night so I guess that's a good thing.
Cat, with the Lorazepam, it doesn't make me groggy in the morning. I actually sleep pretty good with it and am able to wake up easily. I have 1 mg tablets so it's a very low dose. I completely understand how you feel about the wig. I've been trying to tell people that same exact thing - I feel so phony when I'm wearing it. I still wear it to work every day but on nights and weekends it's always a cap. Good luck with Taxol #1 tomorrow. The only really bad SE I've had with it are muscle aches and pains. I think if you manage the pain before it actually kicks in you'll be in good shape. I go for #3 tomorrow and plan to start taking Ibuprofen on Friday night to get a head start on it.
Bobbi, that's great that you are going back to school. I would love to do something like that but I wouldn't know what to study!
Have a great day ladies,
Love, Elaine
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Good morning ladies!
Day 9 of final TC treatment. So far so good. I was really tired on days 4 & 5 from this tx. But I'm now back to normal except for one mouth sore on my tongue.
I have started having hot flashing during the day to accompany the night sweats all night. Like you said Elaine, mine only last for a minute but they wake me up. I am only 42 so does this mean I will continue until I'm 52?????? I don't think I can take it. The risks of the HRT's are not looking so bad (joking).
Bobbi - Please forgive my ignorance but what are "FAFSA Forms"? Good luck with going back to school. That sounds like a fun adventure.
Good luck to everyone still having tx! I am with you all in spirit!
Sonia
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Hi ladies,
I know what you mean, Elaine, about this thread being pretty quiet lately.
I myself am guilty of not being here. I've been so depressed and the pain just won't go away that I don't feel I have anything positive to say. I've only been having about 3 good days before my next Tx. It's really wearing me down and I refuse to take narcotics all the time. I feel like I'm a prisoner in my own home. I don't have a job which means I don't have any money to do anything, buy anything or go anywhere. I can't get a job coz I can't even function any more. I have 2 Tx left and I don't know how I'm going to make myself go. I will go but...
Elaine, I know the hot flashes feel like you're going to burst into flames. I never thought I would wear tank tops all winter. But once a flash hits, the warm stuff has got to come off.
That is great Bobbi that you're able to go back to school. I always thought being a vet tech would be a cool thing to do.
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Firni - I'm sorry you're having such a hard time. My heart goes out to you. I've been having a lot of pain myself lately and I know how miserable it is. I hope your remaining 2 treatments will go by quickly for you.
Sonia - I'm glad to hear you're feeling good!
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Cat - Good Luck today with Taxol! Let us know how you are doing!!
Sonia
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Hi Divas:
It has been a while since I have posted on this thread. i do read everyday and keep you all in my prayers.
I am halfway through and number 4 is on Monday. My TXs seem to be more and more intense. I am so fatigued and feeling off all the time. I really can not wait to have this behind me. I have some physical work that I have to get done like painting the kitchen. And my garden is in dire need of my attention, or this spring and sumer will not be as beautiful as it always is. We have a pool and a very extensive garden and my family look forward to it every sumer as do I. It is one of my ways of getting exercise. As a photographer I use it for many of my greeting cards too. The wisteria is about to pop and there is so much of it that you can smell it. AWWWW
As far a crying is concerned. I cry I have to we have experienced a loss. But I also laugh. And when I see my reflection (bald and fat) I try to smile at myself. I do not want to get in a habit of self pity and discontentedness.
I hope everyone is ok today. We are one day closer to optimum health.
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Swest - FAFSA forms are for financial aid. When that little sweetheart of yours is older you will learn all about them!!
Bobbi
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First of all, my heart goes out to all of you who are having a bad time with depression, side effects, etc. This is a tough road that we are going down and some days are so much worse than others.
Bobbi -- I think it is great that you are starting a new career at 52 -- being a vet tech sounds like a great job!
Cat -- There's no getting around the fact that wigs are pretty fake, but my rationale is that I feel better out in public in my wig. I don't get the stares and sideways glances that make me so uncomfortable when I'm in a hat or scarf, and that makes it worth it. My preference at home and with friends and family is still to wear the hats and scarves or a turban.
The Lorazepam doesn't make me groggy in the morning either, but I prefer Lunesta because it helps me stay asleep longer and also doesn't make me groggy the next day.
Elaine -- Hot flashes suck! I had hot flashes and night sweats on and off for years and now they are back with a vengeance. My covers are off and on 20 times a night! Good luck with your TX tomorrow.
Firni -- I'm sorry you are having such a difficult time right now. My thoughts and prayers are with you. Feel better soon.
This thread has been quieter than usual lately, and I suppose it is because some of the usual contributors are done with TX. I finished last week, but am still having SEs and also dealing with some depression that is creeping in around the edges. I like coming here and sharing and hope it is okay. Being done with chemo, for me, is like having a safety net removed and now I have a month to wait before surgery and then another month before radiation. I'm scared and can't seem to shake that feeling.
My hope was to take an early retirement later this spring when I turn 62, but my need for good medical insurance may mean that I have to keep working another 3 years. I could get on my DH's policy, but he wants to retire too. We've been married a very long time, so I'm hoping that he just needs a little time to think this all through so we can come to a decision that works for both of us. My job has been a good distraction through these past months, but I don't particularly enjoy going to work every day and putting on a happy face when I feel like crap. Sorry to complain.
Take care everyone.
Bonnie
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The treatment that seems never-ending: it can get even the most upbeat of us down now and then. I know I'm not as perky as I was at the outset. I've got one month, 2 weeks and 6 days until my final treatment, then 33 rounds of radiation, then six months until I can even think about starting reconstruction. For me, it's almost a full year more before I can reclaim my life. At times, that seems so overwhelming.
I miss my eyelashes almost more than I miss my hair. And I REALLY miss my taste buds.
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Even though I am done with chemo, this is still the first thread I check-- still dealing with the lingering SE's. Watching the eyebrows thin and know the lashes are next. I absolutely die when I catch my reflection in the mirror -- flushed fat face, bald head, weight gain -- good Lord! And like so many others, the depression has creeped in. See my onc on Friday and am going to demand something that I can take before I slit my wrists!
Rad simulation on Friday -- that's the March rad thread. But I hope that everyone continues to post here from time to time -- this is our "home" afterall and these are our sisters.
Best to you all!
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I'm with Brenny, even though I started radiation (easy compared to chemo) I check to see how everyone here is doing.
I'm one day past when I would've had chemo and I too still have lingering SEs: post nasal drip, tingling in left foot w/a touch of swelling, still funky taste buds - but getting better, and lingering tiredness. Even with radiation therapy I feel my energy level going up every day and feel more normal. Still have my lashes and eyebrows..... but still don't see any hair growth. Though I did dream about having hair....... strange dream.
I've had 6 (out of 15) radiation sessions and am not experiencing hardly any SEs. Won't start the AI until rads are done and I'm thru with chemo SEs.
For me the time from diagnosis to completion of various sessions is about 6 months. For all of you facing future surgery and will be at this "cure" for a year...... you deserve admiration, TLC, and blessings.
God bless
Mary L
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Same here....even though I'm done...I always check this thread. Just been busy this past week with the funeral and family!
Heading out the door now...will check back in later!
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hi, Divas, I've been kinda like Firmi, dealing with side effects that are getting worse -- but still light compared to what some of you are going through -- plus had an abcessed tooth that had to come out and masses of antibiotics, so haven't been posting even though I've been coming and reading...so sorry to hear about all the troubles ya'll have been having, especially your family, Lisa
was glad to hear others have blurry vision, does it go away eventually like most of the other SE's?
my eyebrows are thinning and eyelashes almost gone, but my forearms still seem to have all the hair they ever did! why does this not seem fair???
I am day 3 of treatment 4 (of 6) so still have a ways to go...we'll hang in there together until the end! when I saw the onc monday he said SE's sometimes (often?) take a year or so to clear up...
did anyone but me have a mast. and not plan reconstruction? I just can't see myself volunteering for more surgery and pain at 62...I have a pretty low pain threshold, but it's being stretched some during this chemo
take care, I'm praying for all of us every day, blessings to all
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Goodmorning Divas, I just caught up on the posts. Sounds like we all feel the same way, Cancer Sucks! I sometimes think the media makes BC sound all warm, fuzzy and pink! Just remember the chemo is cumulative and most of us have been thrown into menopause. We're dealing with a lot of stuff. Now I lost my nasal hair and my nose drips CONSTANTLY, never thought I would appreciate nose hair! Can't believe the night sweats, I feel a little better knowing you girls are up at night too, I used to wear flannel sleep pants to bed on cold nights, now it's a tank top and a sheet! What will summer be like?
Hang in there ladies, esp you Firni, it will get better, has to. I'm hoping things start looking up when spring arrives, this cold weather isn't helping. I think this is the challenge of our lifetime, we are facing it with courage and grace.....and no one understands it unless they lived it. That's why we're here.
Have a good day, do something that you enjoy today.
Cinda
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Hello Ladies, it's Berrypatch!
I have been absent for months now, you probably don't even remember me posting at all. I just want you to know that I do read everyday. I have had 4 TX's of 6 with TC. My next TX is Wednesday. It has been a real challenge, and I will be so glad when it is over! Then on to Rads!
Don't think that this is weird, but I am so glad to read that others are bald, gaining weight, blurry vision, chemo brain, hand and foot syndrome, weird smells...etc...because I don't feel so alone. I have had every one of those SE's and more. Right now I am dealing with pneumonia. Even though you ladies are "right here beside me", I can't see you, but it is truly comforting to know that you are out there somewhere! Somethimes I read something about what emotions someone is feeling or an SE, and I thank God for this thread! I truly do not remember what it feels like to feel GOOD!
I will be going back to work on 4/13. My last TX is 3/24. I'm probably cutting it pretty close, but I have to go back. The chemo brain is truly worrying me, besides the fact that I will have not been at work for 7 months by then. I don't think that I can remember how to sign on to my computer or the other numerous passwords that I have to use. I hope that they cut me a little slack for a few weeks.
Winter has been hard. But I know that spring holds the promise of chemo being done, working again, maybe some hair, and getting back to a "normal" life. We will all get there, and it will be SWEET!
We can do this!!!!!
Hugs to all of you! Carol (berrypatch)
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Grancy11,
I had bilater mx w/o recon. in November 2008. I am just now finishing chemo so on to reconstruction. I've heard the expanders are uncomfortable but not unbarable if you fill slowly. Glad you are back and doing ok. I hope you next two treatments go easy on you!
Cinda,
I too am looking forward to sping. I know the sunny days and warm weather will brighten up my spirits. I love spring and summer. Here it gets dark early during the fall and winter seasons. It makes me lazy. During the warmer months I like to work in my yard and be outside.
Hi Carol! You can make it! You are almost there! From what I have read on the threads is rads. are much easier than chemo. We are all here for you and cheering!
Everyone have a great day!
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Good morning, Divas! Just checking in to read posts and catch up with what is happening in your lives. It's always so good to come to this site and know you are here and we are all going through the same kinds of experiences. It definitely helps me to be more centered and to feel less alone.
Yesterday, day 7 after TX #4, was a very good day for me, but last night was a night filled with hot flashes, cold chills, an upset stomach, achy legs and muscle twitches. I debated about calling in sick this morning since I literally got NO sleep, but decided to go to work and save my sick leave for my upcoming exchange surgery in late March. Sometimes life is just plain difficult and yes, CANCER SUCKS!
~Bonnie
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Hello, ladies. I've been travelling with the January group since I started 4*TC on 12/28/08 and figured that'd be the best place for me. But now that I'm staring #4 in the face (Monday), I find I need more of what you gals that have already finished have to share. I can't believe the anxiety I'm feeling and can't explain. I'm so ready to be done, so what's up with the anxiety? I haven't really suffered too terribly from many SEs... just the usual stuff... so I don't think I'm afraid of that one last time, but I'm kinda quivering inside... I'm not sure I buy the losing "treatment as safety net" explanation because I've hated every onc. appointment and treatment experience, even tho I like the onc. himself well enough. I want my hair back NOW and I want to resume normal life NOW*2! Is that too much to want or expect???
Anyone old enough to remember riding an amusement park ride called "the parachute jump"? It's kind like that feeling you get knowing you're getting closer, closer, closer to the top knowing that any moment now you'll be freefalling and shouting "Wheeeeeee! all the way down...
Sorry for the dump, but could use a wee bit of encouragement right now, if you've any to spare... Feeling a bit weepy and I don't think I should be, da&n it!!! How did you feel AFTER finishing??? Elated? Triumphant? or oddly, somewhat let down? The mental part seems to be as harder or harder than the physical part... sooo tired and worn down in the head... body's holding up a bit better, and after rt mx w/o recon, even that's not so good anymore... sigh... Please tell me that better days are soon ahead!!! Cheers?
Gayle.
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