Starting Chemo October 2009
Comments
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Hi MaryNY,
I hope all is well with you. I have another suggestion to make. I like the idea of adding the smiley face at the end of treatment but since it's still so far off for so many of us, why not add symbols (like the breast cancer ribbon, hearts, etc.) for the amount of treatments each one of us is getting - then removing one each time a treatment is completed? This way we can track the progress for everyone and whatch those dreaded treatments nearing the end. Then when the last symbol is removed - replace it with a big fat smiley face. Here is a symbol allof us know only too well.
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Good Morning Ladies!
Day 13 from first TX - I still have hair! I feel like I'm on a death watch for it, though. It is still being really, really nice to me. Hmmmm. . . . went to dinner with my daughter and a friend last night. My head itched a few times but I was afraid to scratch for fear of the falling out during dinner thing.
Had a boob fill this week. Did I say this before? Maybe I'm getting chemo fog early . .. Due to the 2d surgery (for tissue necrosis), the right foob was drained. Now PS is trying to catch it up. He put in 100ccs, so I now have 200 on left and 160 on right. The problem is that the surgery made the right foob really tight across the bottom half - like a push up bra. So now right side looks like she's jumping out of my shirt and the left side is still flat, but wide (almost underarm foob). WonderDoc says he can fix ANYTHING at the implant exchange, and I believe him, but do I really have to spend the next 6 + months with circus boobs? I've been putting little silicone chicken cutlets in my "bra" to try to even them out, but it feels weird and looks weirder. Its still 100 degrees, so disguising with scarves is a little difficult.
AND, my cleaning lady has been putting my "bras" in my 11 yr old daughter's drawers! Leave me with some dignity, Woman! I shouldn't have to share undergarments with my prepubescent daughter!!
At least I can laugh. I tell people to hug me on my "good foob" side, and let them pick which one they think it is. When I tally the results after a few days, I will try to cultivate the look on the other side.
Oh, and I bought leather pants yesterday. Why? Don't know. Maybe I want people to start looking at my butt.
Talk to you soon!
Laura
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Laura - I bought some leather pants several months ago and they were just a little too small. Hoping they would encourage me to lose those extra pounds. However, that has not worked to my benefit. I did manage to lose about 10 but 5 more and maybe I can wear them. I am not sure that cancer treatment was the way I wanted to lose weight. Of course, there are those that gain, I hope I am not one of them. Who knows what I will do, I am not going to second guess anything at this point. The way my luck is, I will gain about 50 lbs oh how bad would that be!! lol
I told my doctor one day when he was fussing about my weight, that I was eating for bypass surgery. I can't lose it on my own, so I might as well gain, that would be easier and get the surgery. He did not think that was funny. Sometime docs just do not have a sense of humor.
Juannelle
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Piffken, that sounds like a good idea. I know the ribbon idea would be nicer but can't figure out how to add it and maybe the code in the OP would be too cumbersome to handle multiple images like that.
I've used a symbol for each dose cycle. Once a cycle is completed, I can replace the unhappy face with a smiley face. Please PM me if I haven anyone's wrong. I'm not sure who has received two cycles already.
Let me know what you think? Does this make it harder to read the opening post? Is it depressing to see so many unhappy faces? Or do you think it might be encouraging to see people chalking off their treatments. I know you probably all have your own Tx dates on a calendar so this will be more about us as a group than individually.
I'm also not sure if I'll be able to keep up with everyone's progress.
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For those that are interested in the bandana with the knit cap, I'm having trouble finding something online. I live in Atlanta and found it at a shop. I'll look to see if I can find a brand or something later today....my online time is almost up...heading for kids' sports.
The bandana is much like this scarf...but in solids or bandana print fabrics. See how it is attached to a knit cap? The girl recommended I also put a headband underneath for even more security and to help absorb perspiration. I got mine in black with black because it seems all of my workout pants are black. There were the normal bandana colors, though...red, navy, etc.
Here's the page reference...you have to cut and paste into browser to see it...I'll see if I can dig up a brand or company name later since I can't find an exact link.
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Dear Mary,
Wowie! The opening post looks so colorful and different now. You even got my 2 completed cycles right. I like it but I also know it will be difficult to keep updating it every day. Let us know how you would like us to update you on our progress to make it easier for you.
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Onty, glad you like it. I thought the embarassed smiley would work better than the unhappy smiley as it's easier to see it onscreen. Some people like you have a long string of smileys as you have the 12 doses of Taxol after the AC. I figure that most people have treatment three weeks apart, except the few of us who are on the dose dense AC, so I can kind of guess when a dose has been completed. Then of course follow up doses of Taxol/Taxotere and Herceptin seem to follow different patterns. Then there will inevitably be treatment delays too, so I think I should wait until you post that you have completed a dose to update your smileys. If I see someone post that they have completed Tx #2 or whatever, I'll update the OP.
My suggestion -- When you have completed a Tx, pls bold the treatment no. in your message. For example: "just completed Tx #2 today." This will earn you a change of expression, at least in this online world. No need to PM me.
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I like to shift from "neutral face" to "smiley face" for each treatment! It looks so much happier especially now that I have my first smiley. Not that I feel totally smiley, mostly tired and a little strange after my DH cut off my hair for me. I don't understand why everyone got energy from the Decodron but me, but I'll take it as it comes.
Be well, Sido
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Dear Sido,
Are you getting Decadron at home also or only once by IV before chemo?
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well it has been 24 hours since my first chemo and I still feel great. I guess I can thank my Dr. for all the great drugs. My dining room is starting to feel like a hospital. Boxes of med. supplies and pills. Thank goodness my kids are old enough to know to stay away from it all.
I hope everyone has a great weekend.
Michele
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Glad those of you who just started are surviving the after effects.
The opening post looks great!
I did find the brand on my workout bandanna/scarf thing. http://www.hatswithheart.com/
If you look on that website at the annie scarf, that is what I use for working out. The other website I referenced earlier actually had a better picture of how it is a knit cap with a scarf sorta attached....so no bald head shows through if the scarf moves around.
Anyhow, for true bandana patterns you need to look in the sale section....I guess bandanas are Spring/Summer items? But I think there are a number of scarf fabrics that would work...I bought mine off of a store inventory, so some of it I guess isn't on the website any longer.
Those that are having trouble with the hair thing, that's me too. I think when the boob changed, that was private. The problem with hair is that it is so public. We can't go anywhere without seeing people doing double-takes (unless we're in a wig) and then there's the whole around the house look. The boob was the offending cancer container, and changes in it were much more private. For me, that was probably what made it easier....although I remember after my mast. having a lot of people giving it a once-over as well. I had immediate reconstruction, and my PS did a great job, so I remember thinking...go ahead and look, YOU aren't going to notice anything!
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Ladies, our minds and spirits are amazing things...if you asked me Thursday night if I would be able to be happy and have a good weekend I would have said NO...I planned to just sit around and have a pity party quite honestly. I have not been this way at all since diagnosis, but shaving my head brought me to my knees. Today I woke up and it is a beautiful crisp sunny day and how can I be upset anymore? It is a choice and I decided this morning that I was not going to be laid low by a pair of clippers! No, I don't like the way I look without hair...it is quite unsettling, and quite frankly UGLY...but it doesn't define WHO I am or where I am headed. And it is my reality today, tomorrow and for the next few months.
So, I put on my big girl britches, got my eldest daughter and went to the wig shop to buy something that would make me feel better. My hair was just above my shoulders in a sleek bob with bangs...I have a wig that is almost exactly the same.....a blessing from a friend....I wore that to work yesterday and everyone just thought I had a haircut. Well, today I bought a long somewhat loose curly wig that is a beautiful color, just a touch darker than my own hair with beautiful highlights. It is really pretty and hangs very nice...and I don't mess with it. I love it. It looks very much like my hair when it was long. I am going to wear it tonight to a concert at Billy Bobs! Really, a good wig that is more glamourous than what you maybe were before is a great uplift!!! (Juannelle--Dona's wigs on S. Hulen is the best in FW...they have a great selection and are just wonderful).
So, there is hope ladies. Yes, losing my hair was horrid and traumatic. But I am glad I did it the way I did. My hair on day 15 was coming out about 50 hairs at a time and I probably would still have enough hair today to not be really noticable...but I was so scared of it coming out in clumps and being 'patchy' that I would have just stressed myself out more. This way I got it done and over with and had my meltdown and then could work on acceptance. It worked for me. In the end, we all have to make our own choices and travel this road the way we are most comfortable. And losing our hair is NOT easy....but our spirit will carry us through.
And I love the scarves with the built in cap...I just ordered one.. thank you.
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Renee Jean...you go girl! I think it's perfectly fine to have our moments....the ladies I've met at chemo, several who are on their second or third round of all this, tell me it is something we just have to let come when it does. What I noticed is that when I see them, they are strong, they are positive, they look good and they just get on with the business of getting better. That's what you did.......good for you! And I hope the wig is a hit!
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When my hair starts to go my husband is planning to shave me. We both have a funny/warped sence of humor so we plan to make a fun event of it. Take some pictures. The ladies who come to my support group that come in with no hair I think look so beautiful. Some times we hide behind our hair. I think a women looks so beautiful when you can see her face. When I see a bald ladie I usually tell them how beautiful they look. I hope someone tells me that.
My girlfriend is planning a day trip to visit me after I loose my hair. We are planning a lunch and shopping for wigs. She makes me laugh and will be honest enough to tell me what sucks and what will lookk good. I think it will be a happy fun day, or at least I hope..
Michele
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we are all beautiful.
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Val, you're right, we're GORGEOUS! At least, that's what my fiance keeps saying, even though I know that I'm looking rather straggly these days.
Had another bout of nausea this morning - but since I haven't eaten in about a day and a half, nothing came out! I know, TMI, but it's what's happening with me right now. I slept until 2:15 p.m., which is nearly unheard of for me. I'm worried that I won't be able to get any schoolwork done if I feel this crappy. I have no energy, and I'm tired of feeling sick. Ugh. I know, I'm complaining too much, but I know y'all understand.
Love to all,
Shelby
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Hi All!
Shelby - don't try to fight the fatigue - REST- you will be better for it if you take the time for regular naps rather than when you are falling down tired and can't nap because you have stuff to do...
Renee Jean and everyone else who's going the wig route.
I am LOVING my new looks.
My head was shaved yesterday to about 1/4 inch. I was surprised to see how many bald patches I had!
I don't mind my baldness but I'm having fun wearing a wig. No more bad hair days! I just pop one on and away I go.
The KEY is wearing makeup. I'm not much into makeup but with the new hair - makeup is a must. At least eyes and lips!
I went out today in my wig to my son's soccer game. You would not believe the looks I get with my wig!!
One lady (someone I didn't know) was staring at me and I thought uh oh she knows I'm wearing a wig. But no she came up to me and said I LOVE your hair - do you think that style would look good on me? .
Another soccer mom didn't recognize me but when she did she couldn't say enough about my "new" hair do. I told her that I was wearing a wig and she said "wow I didn't know that anyone wore wigs anymore". So I had to tell her about the chemo and she said she had no idea - that I look so good she wouldn't have believed it if I hadn't told her myself.
I just wanted to tell you all not to be self conscious about the wig. If you get a good fitting wig that suits your face most people won't know that you're wearing a wig.
Seriously even if it's different from your previous hair colour and texture as long as you ROCK IT people will believe it!
Ok that's enough about wigs for now - I've got to go get ready for a birthday dinner party and I need to figure out which wig I'm going to wear! Do I go dark and sultry or long and flirty?
Have a great weekend everyone!
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Shelby - forgot to tell you that after my FEC TX I felt nauseated for the first day (couldn't even keep down the anti-nausea meds), then I had days of no appetite (lost 5 lbs) but by day 7 my appetite came back like gangbusters.
I had "mung mouth" for about 1 week and the fatigue didn't go away until day 7.
But from that point on I was feeling good - or as I call it my "new" normal!
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Hi Onty, the Decadron was in pill form the day before, day of, and today. My dr warned me that I might "slump" tomorrow without it, but that seems to be a stretch. Food seems to perk me up, but not for terribly long.
Valerie and Renee Jean, you are both beautiful! I hope when I feel better I have the same attitude though I'm still leaning away from wigs. MarieK, I'm sure you are just so stylish, but I vote for dark and sultry during this time of year....
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MaryNY-love the new look of the opening post. Great job! I wanted to say hi to Piffkin. It looks like we're starting the same chemo cocktail on the same day. Maybe we can keep in touch and compare our SEs or hopefully, lack thereof. I'm still trying to get all of my ducks in a row before treatment starts on Thursday. Everyone enjoy the weekend (if you can).
Hang tough ladies!
Dee
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I had a really good day today. Had a date with DH and then on to Wal-Mart to get my chemo supplies. I have a big basket that is just full of all the things I will need.
ReneeJean -- I may look at wigs later, but I am not in the mood now to even consider a wig. I think it is the decision thing, no more decisions. I want my simple life back.
I know the people in my life that count, will not care whether I am bald or not. They just want me here for many more years and that is what counts.
Is it taking about a week to get over the treatments? After the first week how are the other two weeks? I am just trying to plan the next couple of months.
Juannelle
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mary NY love our new opening what a good idea and the happy faces we get when werve finished our doses you ladies sound like very brave worriers getting on with the fight keep it up mine starts this friday i keep reading all of your posts and know what is ahead of me im so thankful for this site dont know how i would get through it all have a very blessed and semi normal weekend my new bc friends
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Dear Sido,
I think those that get Decadron longer than you - yes there are some - get the most UP feeling form it. I'm only getting Decadron the day of chemo in IV and I don't feel a thing.
Dear 1L,
Yes, plan for 5-7 days of GI issues, fatigue, low fever etc. Then 1-4 days of lower WBC. Second week is usually ok.
Dear Dee,
Welcome here.
Dear MarieK and all the lovely ladies,
Love you!
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Hi 1L-
My experience with the decadron (Day before , day after and of course day of) was that I did not feel much and slept ok.
Everyone's response to chemo is different but again it doesn't hurt 2 know other's experiences or we wouldn't find so much help here! First day I was VERY flushed and red but glad to have it over and did not feel bad.Had to keep the dog from drinking the toilet water and my head was very fuzzy. Nurse told me to rinse mouth w/ salt water evry time I went in to bathroom (memory trick) and when I did not I felt it in my mouth - especially 5 days out - soreness- love the salt water trick - its great. No nausea - took the pills and the ativan 1mg 2x daily.
The third and fourth day were the worst. Felt so FUZZY (not from the ativan have taken that b4) and frightened. Fifth day better and by day 7 by 4pm it felt like the fog lifted and I felt much better physically also, Am on day 10 and going to work tomorrow. PHEW! I feel like the worst is over but my scalp hurts (only sx left besides taste weirdness) so we know where that is headed (ha ha no pun intended). Love to you all. Valerie
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greetings
sounds like you are all doing well-- a couple of tricks I used during chemo--rinsed my mouth out 5x per day with warm water and baking soda--not sure if it helped, but I never got mouth sores....had my head buzzed after the second treatment and started wearing the wig.... just put it on and went. But did I ever cry in the weeks leading up to the cutting. The hardest day for me in all of this was the day I had to go in to get shaved--- I cried all day.
But, my hairdresser said" you won't love the wig, but you will like it" and she was right... it did make life alot easier--- I was never very good at styling my thick hair--- and with the wig, I did not have to.... it always looked good. I suggest getting a good one or two--don't skimp on this particular thing--- because you may be wearing it for 6 months or so----
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Valariekd,
My dr. and the nurse said to rinse my mouth out with Club soda, which I keep in bathroom as well. At least I don't have to make salt/water. So far no mouth sores.
Michele
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Thanks for all the good advice. I may try to do all of them... salt and baking soda in club soda, not real sure how that will do or taste... lol It might just be the trick.
I may just end up taking the time off from work, so I will just not have to worry about it. I just can't seem to make decisions lately. I don't know what it will be like with "Chemo Brain".
Maybe it will not be any different.
Thanks for all the support you guys give, I know it will make the treatment lots easier.
Juannelle
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Dearl 1L,
Salt and baking soda in club soda will be too fizzy......LOL.
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It would be like those fizzy candies that my kids use to buy. Maybe I would blow up the bathroom at work, that would be pretty funny.
I really guess I could use the salt and water at home and the club soda at work, that would be lots easier than mixing salt and water at work.
There are so many things to try and remember to do, I just hope I can remember all of them. I have printed lists off and I guess I will check them lots, so I will not forget anything. I want to learn from everyone's experience, because some of these things, I don't want to experience myself. Know what I mean?
Juannelle
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Thats why we are here dear 1L....
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