August 2010...anyone starting chemo besides me?!
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LIzzymack and all my homies, Since we have bared our souls on this board....any of you still think "I can't believe this is happening?". Anyway I highly recommend the doo rags at Wally world. $2.50 mesh and vented. Think I have found my baseball cap look.
Libray Lil
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Lisa: The pictures aren't crazy. I've taken pictures of everything so far (maybe I'm just weird too?) I've got pics of my "before" breasts, after my BMX with my drains hanging out, my TE "after" boobs, my before hair, my short haircut, and when the time comes, I'll take some bald pics. I don't intend for anybody to ever see most of these pics, but for some reason, right from the beginning, I've felt compelled to document it.
Rachel: I hope no underarm or leg hair is an FEC SE! Bring it on.
Carolyn: I don't have any sores, but my mouth is getting real sensitive. I've done the biotene and baking soda. The only other thing I was given was a pack of biotene gel (I guess sort of like Orajel for toothache pain?) By all means, call the doc. Like somebody said, they get paid for it, that's what they are on call for.
It's a lovely day here today. It was in the mid-70s this morning and DH & I took the dogs for an hour-long walk. DH is cooking bbq for later. Yum.
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PS, Librarylil: The "ethnic" wig stores are a great place too. They have stuff I've never dreamed of for covering the head and it's cheap.
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Sweeny LOL i'd stop burpin if i could- dont know why but have had lots of gas (better the attic thn the basement though)!!!
lizzy- no FAIR! my onc says no alcohol during treatment. I'd love a liguor induce rumination! Best get it out of your system while you can still drink
You OWN hair weave idea LOVE IT!!!Side note when i complaine to my frineds that i cant drink they all remind me that i dont drink anyways (prob bout 2 years since my last drink) I calmly say to them if anything is gonnadrive a person to drink it would be being told that you have stage 4 breast cancer! that cracks them up!!!
Cptry- mouth sores- my mouth started feeling scaly and tender, so i uped the amount of times i mouth washed that seemed to help a little. Also a tip i got dehydrated then because i didnt want to drink anything (taste and pain) so just remember to push the fluids!
calamtykel- WHAT AN AWESOME FRIEND!
Gingerbrew- Sounds like you had a great visit!!! I dont recall EVER seeing a slug in AZ (even during the monsoon season) so i bet she was just AMAZED! Growing up i'd try to keep slugs as pets but my mom would freak out lol. i remember seeing this 11 inch or so banana slug it was GROSS/AWESOME!
ABOUT HAIR LOSS- okay so i lost a large majority of my hair and shaved the rest off. Now my pink spots are starting to get a little fuz on them, what up with that? The texture is all off though, then the parts that still had hair are growing 2 so i have 2 lengths of hair lol, need to take a razor to it to even it out! Oh yeah and its lighter than my hair too, like a light brown and my hair is a dark brown.... My husbands therory: my 1st treatment was done on a friday and i had to wait til monday for my nuelasta shot, but this round of tx was done on monday so i didnt have to wait.... Any thoughts on this? I see my onc tomorrow for a follow up to the hospital stay so i will ask him. Oh yeah and my down town hair is gone, but not my leg hair but thats growing extremly slow, i haved over a week ago and its slightly pokey where normally within 2 days of shaving i'd have to shave again! same story with my underarms!
ENJOY THE HOLIDAY EVERYONE!!!
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I know this was posted before (not sure if on this post)
this company gives away free head wraps to chemo patients, i got mine in the mail very nice, just not cold enough to wear yet...
http://www.franceluxe.com/i/goodwishesscarves/GoodWishesScarves.html
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Hi Chemo sistas, I have been trying to keep up with this busy board but so many post. I just have one thing to say.....I didn't think loosing my hair would make me so sad, for the last 3 days it has really started to shed, yeah like a dog in the spring. Still not ready to wear anything yet. Guess I'm waiting till I look like a mangy dog : ( everyone says it will grow back but on Fri. when I was getting herceptin there was a lady next to me getting herceptin too and someone asked her when she was done with chemo and she had been done since Feb. and she hardly had hair.When I got home I started looking on the message board and I found out that it still doesn't grow in while your on herceptin. I was upset to find out that it will be way over a year before I have hair again. I thought just while I was doing chemo which is till Dec. Thats a bummer. I really need to get over it.
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GOOD DAY CHEMO-SABIS!!!!!!!! Just checking in on this lovely holiday weekend...
Yo Sweeney!!!!!!! "Canadian Bacon!!!" (Good movie...if you have not seen it, you should!)Don't make us go to war over this "chatterbox" label you have not so innocuously given us!!!! Yeah, so we are a bunch of talkers...so what?! Who cares?! (this is Joy from the View that I am doing now!!!!!!!) This thread is "THE BC VIEW!"
Ginger: the chin fur (as I tell my cat!) is often MOLE based! BTW, general good health is a great thing. We are being *treated* for cancer but cancer is not everything, it is just another thing. Good point!
CKPTRY- I hope those uncomfortable mouth sores go away. Definitely call your onc. Do you know in med schools oncs are trained specifically to understand the emotional attachment and the challenge of treating patients for cancer with chemo? Call. Don't hesitate. They can call the rx in.
SPTMM: Enjoy that shopping! You know what always made me crazy? In this part of the country, the Northeast, they roll out winter clothes and it is usually HOT until October so you end up wearing old clothes (or your new stuff and sweat!) for the first month to 6 weeks of school and then you get to wear the new stuff when the weather changes. I think all parents should do school clothes shopping in July for the first 6 weeks of school and then do another shopping in mid-October!
Rachel: I totally forgot that no shaving thing to put on my list for things to be grateful for! Thanks for the reminder! I am so happy to skip waxings for a while! I never really had hair on my thighs at all and my pretty light on my calves. I do get hair but not too much. Well, goodbye to all of it for a while!!!
Calamtykel: that is really cool what your friend did! Dinner sounds good.
Lisa: I take/took pics of everything-boobs before and after, drains, scars and will definitely chronicle my baldness! Go for it. I intend to make a story board of sorts of all of this without graphic photos, of course! I don't think it is weird at all. Right now our situations are not comfortable but this is just another season in our lives and it warrants recording just like any other.
Omaz: TWO genius ideas: first buying those soft lunch bags for icing is a great idea! That is a really good one. The other was going to ethnic stores for wigs and scarves. I got a beautiful wig at an ethnic store and I intend to go to another one in NY next week because some of those scarves are SO dressed up and ornate, they are beautiful.
Texas: glad you are feeling better and LOL on the ‘better the attic than the basement!!!!!!' Very funny! Also, I don't drink much but this entire process will cause anyone, as you said, to do something to get away!!!! Yes, I am enjoying my last few days! Also thanks for the franceluxe link. So many have mentioned it and I am finally going to check it out this week.
Libray Lil: nearly every day I have that "is this really happening" moment. Sometimes I wake up in the morning and for ½ a second I think the whole thing was my mind going on vacation while I watch the inside of my eyelids and then it all comes flooding back!!!!!
Iowa: the hair thing is a bummer but perhaps you will grow to like wearing some of the scarves, hats, wigs and OPTIONS we have now without hair. Hopefully we will never not have hair again but, for now, I am going to live it up. I am going to go bald some days, wear a wig, some of the scarves are beautiful, I have tons of baseball caps...I say enjoy it. I hope you find a little joy in having so many options that you can color coordinate with your clothing etc... I think it will be fun. I have a very good friend from India and she has always worn scarves and pretty, ornate head adornments...it can be really fun.
I hope every is having a great weekend and enjoying this nice weather. Have a good day and do one good thing for yourselves today-
Your FEARLESS Leader!0 -
Hi Lizzy, I also put some extra batting (quilt) in the feet bags so they fit snug. I did buy and use two elasto-gel caps. My first taxotere infusion went pretty long so I don;t think I got optimal head cooling.
I can't take credit for the ethnic store idea - I read that good idea too, but now I can't find the post so I don't know who suggested it.....
Iowasue - I am about 5 days behind you, I noticed some hair on the drain today which I don't normally see - so its coming. I have heard that hair does grow back while on herceptin just a bit slower.
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Hi all,
On the subject of hair, here's how mine happened-
Day 14- nothing. felt sure I had "beaten" the system.
Day 15- still nothing. but maybe an extra strand or two in my hands as I took my ponytail out?
Day 16- nothing. for sure I am going to be the only one who has never lost my hair. They will want my picture for the medical journals.
Day 17- chunks of 3 to 400 hundred hairs coming out at a time. Me? Sobbing mess.
Day 18- obsessed with hair. pulled out thousands upon thousands of strands. Demand husband look at each strand being lost forever. Husband looking at me, after 5000th hair, like I might need some of those "anti-anxiety" meds that my doc said to keep for "special occasions".
Day 19- cut and shaved it.
Day 20-24- HUGE amounts came out. Scalp super tender. Weep each time I walk by a mirror.
I spent the first week after fairly mortified by my baldness. Felt very insecure going places. Now I plop on my baseball cap and go anywhere. I feel fine/normal/great. I have worn my $700 wig twice. It still feels like a fur hat. But I may wear it once I go back to work, as it is very professional looking. I only shave my legs once every two weeks, my armpits NEVER, my fingernails hardly grow at all and the one errant hair on my chin seems to have disappeared. That one I hope NEVER returns. However I am preparing myself for it to be the FIRST to return and to show up with a new post chemo friend. Oh the joke is SO on me.
So that's the Hair Story as I know many of you are going through these stages right now and I feel as one of the first that did chemo in our group it's my responsibility to tell you that pretty soon you too will look like a mangy central american dog and think nothing of it all.
Love to each every bald one you, Sweeney. p.s. my new obsession is my eyelashes and eyebrows....will keep you updated! My husband would appreciate it if he didn't have to get the hourly updates, so may switch the "obsession report" over to you dear gals....:)
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lol! virtual homemade bread for everyone on the board!
I fell asleep twice today - I have been working all day on my online stores and going to gear up the kids schoolwork for this week (homeschooling). I feel wiped out but I think the cold is going away - no more sneezing so far. I think rest is so important when you feel like you're fighting something on chemo!
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Ok sweeney..... you made me smile, was starting to think it would be a long time before I smiled again. You obviously had a lot more hair than I did to begin with, I did make my husband look at the piles of hair after i showered. Thanks for that special report, and yes I thought I was going to be the one not to loose my hair the one for the books, not thinking so anymore. Thanks again, Sue
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Lol Sweeney! The hair timeline is very helpful. I'm on day 10 past my first chemo and I know my time left with my hair is short. People keep saying that maybe I won't lose my hair and I have to remind them that yes I will. There's no getting around it. My goal at this point is hopefully to keep it past the 17 day mark. I have tickets to go see Jason Mraz in concert on the 13th and I'm really hoping to be able to go with hair!
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LOL the hair report! I am sure mine is going to fall out any second! I am not so worried about being mangy/bald, I just wonder if I will be out somewhere when all the hair starts coming out in chunks......meeting a new client? Pulled over for speeding? Driving and have my vision obscured by chunks of hair flying everywhere? And so on....
DH is trying to figure out why I would care. Sigh. Men. He is doing the best he can.
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Hi Sweeney--Love the post, summed up the hair loss perfectly!
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Toothbrush - I found a 'post-operation' toothbrush by Sunstar GUM that you can order online that worked for me when my mouth was sore. It is very very soft but still was able to move out the little food particles.
https://cart.jbutler.com/store.php?crn=229&rn=495&action=show_detail
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Sweeney, You crack me up. Everyone (except the MD) kept telling me mine might not fall out. Husband was in denial. Kept telling me to just have it cut short. 14 days post chemo chunks started falling out. The buzz definitely beats the splotchy look. Went out with the baseball cap first time today. Wig at work so not to scare the small children, but on days when school is out will go with baseball hat and scare adults. No chin hair could be a definite perk. Libray lil0
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I have round three of AC tomorrow. I have blood draw at 12:30 Doc at 1:30 and then infusion beginning at 5:30 scheduled until 9:00 Makes no sesne to me but I'll be there. I hope they can schedule me better next time and onward. My husband is taking off of work (I think, I hope) to go with me becuase I got lost last time and this time it will be dark out. I usually have a good sense of directions but there are a lot of streets here that run on angles and that is where I go wrong.
The newlasta will be delivered here Wednesday along with ice in a protectice little foam cooler.
The kids are all gone now. Wah! My MIL is still here, she is going back and forth between our house and our daughters where there is the new baby to help out. I thought she would cook but she said she doesn't cook anymore and she meant it. LOL. She will only be here until Saturday.and is 81 so my husand is spending quality time with her. I am trying to get used to the empty house again. Good memories this weekend.
The pet roller is good for collecting hairs about to fall.
If a person is already in Chemo is there any point in the Oncotype test?
Wonder what my SE will be this time.
Ginger
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Good evening CHEMO-SABIS!!!!
The weekly poem, written by an anonymous writer as most of these are, is as follows:
People think I'm crazy.....
To thank God for this gift....
They say I must be "brain dead"..
To even consider this...
But it has made me understand ......
Life ups, and yes it's downs.....
It has given me the ability...
To laugh through all the frowns....
My gift from God's a treasure...
I celebrate each day....
And live my life as best I can...
And help others, on my way.....
When God gives gifts, we do not want....
It is our challenge to..
Accept them in what form they take....
And live our lives anew...
For the time may come when I am gone...
But my friends won't need an answer....
To everyone who knew me well.....
I didn't die... but truly learned to LIVE with Cancer.
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Good Luck Ginger, here's hoping your side effects are minimal and your infusion is problem free.
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Helloooooooooooooooo, where is everyone this morning?
Sweeney Thank you for that funny and heart-felt description of your hair loss experience. I am around day 10 post first chemo and dreading the approaching hair loss. I feel like that will make this whole thing "real" (as though it wasn't already) and then I will finally have to fess up and tell everyone I see regularly who doesn't know yet what is going on.
Librarylil Absolutely I still think "is this really happening". Maybe not quite every day anymore but still pretty often and definitely whenever I think about losing my hair!
Gingerbrew Good luck with your treatment tomorrow! I hope your husband is able to go with you and that you don't get lost! I will think good side-effect free thoughts for you!
I also emailed the Franceluxe people that texasrose mentioned and got a very nice email back from the lady who runs it. They will be shipping me my scarf soon. I definitely recommend that the rest of you contact them. I also came across another website that will give you a free head wrap: http://www.gailafund.org/site/hats_gaila_for_patients.php. I requested one from them last week but haven't heard anything yet, though people on other boards around here recommended them.
Yesterday I went out and bought a pair of those Skechers "Shape Ups" shoes, the ones that are curved on the bottom. I wore them for my walk last night and ended up having to cut my walk a little short because my feet were hurting. I am hoping that I just need to break them in a little and then they will be comfortable.
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I too emailed the Franceluxe people that texasrose mentioned and also got a nice email back from the lady who runs it. They will be shipping me my scarf in about 4 or 5 weeks. Their prints are simply gorgeous!!!!
Off I go to chemo # 3 Pray for me.
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JSW: let me know how it goes with the Skechers. It might be break in. My friend Mary said something similar. I have been considering getting them. I, too, am calling France Luxe today, as I don't have email configured so when I click the link for the name I am getting nowhere, and I am seriously looking forward to getting that scarf. They have really nice stuff.
GINGER!!! I am so sorry I missed you before you left. It is so beautiful out today, I have been out in the yard working and doing a few things in the shed. I am glad you had a great weekend and I hope your tx goes well. More importantly, however, I hope your husband got the day off/is picking you up later with that evening tx, having someone drive you home would probably be, not necessary but, helpful. Let me know how it goes.
Good day all----hope you are all having a good one-
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I'd like to throw in my Good Luck to you Ginger as well as the others on this board. Tomorrow will be # 14 since my 1st. session. Day of, next and following day were uneventful as far as SEs, but then the weekend came. Fog, rain and haze not outside but in my own head. I did not get neulestra or neupogen because the need for that would be based on the results of my blood test one week after my first infusion. Well, my white count was v e r y low so I was put on an antibiotic to stave off infection until count went up. Did a number on my tummy but made it through. Went to Onco today and count back up and feel pretty good, good enough to do laundry, Damn. #2 session scheduled for Sept. 15, right on time. The difference for me will be the addition of sleeping medication for steroid wiredness [is that a word?] and the addition of neupogen for white blood cell nourishment. Hopefully the extreme tiredness won't be so severe and sleep will come easier. About the hair, I suppose that checking the mirror every 10 minutes is not going change anything for better or worse. I know there is more residue on my styling brush but big clumps are yet to come. My wigs and hats are ready to go except wigs need an initial bang trim.
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This is the email addy for FranceLuxe; goodwishes@franceluxe.com I contacted them today.
I don't have Sketchers but have a couple pairs of MBTs and they rock (pun). You can feel the change in posture and the working of different muscles, love 'em. I would sometimes get a bit of lower back pain when I walked a long way, not with MBTs. I bought my DH some... kinda makes him look like Frankenhusband but oh well!
I finally get my port on Thursday. Burn is still healing but much better. I haven't decided on which chemo or where yet but hope to be able to start next week.
Take care all. Peace, A
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Thinking of you today Gingerbrew!
Good luck on Thursday, Adey. I've been really happy with my port, even though it was sore for awhile at first.
I am happy that I had a moderately successful morning dealing with insurance issues. I finally started getting bills from all my initial consultations and scans. Some were submitted to the wrong insurance company (because people do not READ the information on the card that they always have to take a copy of!) One doctor was listed on the ins. co's website as being in network, but they billed him as out of network - luckily they said they would fix it. One - the insurance company paid the "PPO Discount", which means that that is all the Anesthesiologist should be paid, but they billed me for the extra anyway. :-( I called the anesthesiologist's billing company, and they won't let me TALK TO A PERSON! The only thing you can do is leave them a message and they will "call back within 3 days." We'll see...
My BRCA test was supposed to be covered by my insurance. The dr. had told me that the test usually costs "a couple hundred dollars." The company that processed the test - (No one GAVE me the test. I swished some mouthwash and spit it into a test tube.) billed my insurance company for $3,300!!!!! The insurance company said they would pay $300, and I was responsible for the other $3,000. Then I got a bill from the company for only $300. Still waiting to figure that one out. :-(
I made it through 10 hours of rehearsal on Sunday, and 10 hours of rehearsal on Monday. This weekend (when we open) is going to be fine, but I'm really, really scared of how I'm going to feel the week after my next chemo round (Sept. 16). It is a lot of energy in a 3 hour show, with a 45-person cast all thrown into a VERY small and hot dressing area. OY!!
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Lisa- I applaud you on handling the rehearsals, it's gotta be grueling. Will the "opera" be coming to Chicago?!
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Sweeney "Day 18- obsessed with hair. pulled out thousands upon thousands of strands. Demand husband look at each strand being lost forever. Husband looking at me, after 5000th hair, like I might need some of those "anti-anxiety" meds that my doc said to keep for "special occasions". "
Okay. I'm sorry - I know it's not funny, but I was hysterical over this. I too am obsessed with pulling thousands upon thousands of strands!
'Demand husband look at each strand being lost forever" ROTFL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!I've been driving my husband crazy with the hair pulling! HE doesn't get why I have to "pull" it out - it's driving him crazy!
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Good luck Ginger! Keep us updated,
Sweeny- you look good bald
I just may keep this look post chemo and for the next 20 years while i am in remission Sorta the whole "amber rose" look!Lisa- my brca test was out of network but i only had to pay 500+ (less than 550) so 300 seems reasonable, dont question it lol beats the 3000!!!!!
Everyone- Hope your day is wondreful! Sometimes its hard to see the blessing we have when we look at what we don't...
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Liz- so... you're starting on September 55th?! I thought it was the 9th, did it change to the 15th? (c: I get my port on the 9th and hope to start whatever chemo I finally choose next week. Thinking of ya, A
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THIS MIGHT SEEM ODD BUT WHEN I WAS LOSING MASSIVE AMOUNTS OF HAIR I PUT PACKING TAPE ON IT AND PULLED IT OUT. i really meant to use it like a lint roller but it was super adhesive and tons came out. Sorta like a cheap waxing strip lol I only did that a few times and then just shaved it all off
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