The Chemosabe March Cruise
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Bar Reservations week of April 1 - 7
Monday:
Tuesday: DMKnanny (#2), GrammyNancy (#2)
Wednesday: Angel (#2), Marshabel, LisaSDCA
Thursday: MissShapen (#2), Musicmom3, Maxgirl (#3)
Friday: MisK (#2), HollyHopes (#3)
Bar reservations still available -
Angel - I remember how ugly I felt after my mastectomy and losing my hair the first time. I was devastated - even though I tried to act like it was OK. It wasn't OK. However, with time, you find that you will adjust, and there will come a day that you will feel pretty again. It just takes time.
A hint for the hot tub. I found a 'breast enhancer' from a local department store and used it to 'stuff' my swimsuit. Be sure to pin it it in or it will have a mind of it's own and end up scaring your friends when it gets caught in a jet stream and floats between their legs. :-) Eventually you can get your self a 'swim boob' _ I saw them on webpage I mentioned above.
Gentle hugs Angel - you have every right to cry - but also every right to enjoy every minute of every day - including that hot tub! Jacque -
Fellow Crusiers Missing!!!!
I have noticed that we have not heard from several of our crusiers for sometime. Please let us hear from you and let us know you are okay. We miss you.
Those missing-
Marsha2664
Barbkirk
BettyE
PMarsh
jfsnh
Paula37
Fireba
diamonds48
Sybilvox
Jeannette39
3boys4me -
Just updating the list to include my number.
Bar Reservations week of April 1 - 7
Monday:
Tuesday: DMKnanny (#2), GrammyNancy (#2)
Wednesday: Angel (#2), Marshabel, LisaSDCA
Thursday: MissShapen (#2), Musicmom3 (#2), Maxgirl (#3)
Friday: MisK (#2), HollyHopes (#3) -
MissS -- Good thing I wasn't drinking anything, or I would have snorted it through my nose at the mental picture of your head being squeezed by a knee high. Too funny!
Diana -- Oh, noooooo, don't dangle an extension in front of my eyes. My middle name is Procrastination.
Holly -- What a rough time you've had! Sorry to hear you have to go on disability, but it certainly sounds like your body is demanding it. Maybe you'll have some time for checking out those sites that tell you how to squeeze a $ to the last cent.
The lint roller was definitely more full today, and I scrubbed the hair off the front of my legs. Plus my head is itchy, itchy, itchy! -
Holly-I know how you feel about the disability, but I admire your strength to at least try. From the episode you described, I am sure they really don't WANT you to come to work if you're gonna behave like that! Nice to know the priest was there when you needed him. Are you familiar with St. Agatha?
JacqueN-I have been tempted to just buzz it and be done with it but what if I am the 1% who does NOT lose their hair (I am an eternal optimist!)
Also, in addition to the places JacqueN mentioned, if there is a Liz Claiborne outlet store near you, they have a lot of cute hats - and they ones I bought were only 9.99! Check it our if you can....not sure if they are sold online from there or not. -
Third day after tx. Still feel like UGH!!! Headache still here. When the truck ran over me it hurt every bloody bone in my body. The only place I don't feel it is when I sit. I have more than ample padding there (imagine that! ) I am assuming this is the Nuelasta. I do have RX pain meds, but is barely touching this one. Will talk to the nurse again tomorrow. I just wish I could blame it on a ski wreck or bar fight or something else.
On top of that, I went to shower this morning and my tummy is dry and scaly. It has never been that way before. I cried for an hour . Stupid, huh? I thought these were supposed to come one at a time, is there not a rule??? If not we should make one! I decree that SEs can come only one a time. Do you think that'll work?
The one good thing was that I was going to shave my underarms and thought, What's the point, it should take care of itself. What a nice thought!
Now, where are the margueritas????? -
Sorry all, was thinking noone posted the last couple days, didnt get any in my email, so I Hopped in to ask where everyone was, thought the ship might be sinking. I had the lifeboats ready. Silly internet stuff. Then I had to take forever catching up on posts.
Angel, you made me laugh, not run.
And yes I think this may be a way of dealing for my mother. One day she says oh I did this for you so you could rest, the next day she doesnt understand why I am emotional. Oh well, guess I dont understand it half the time either.
Angel, sorry about how down on yourself you are right now, but I truely understand, feel it alot when I look in the mirror at my boy hair and my grossly scarred breast with the frankenstein stitch marks. Then the DH mentions sex and I truely shrink. No interest in it what soever right now. And he thinks I dont like him anymore.
Charlie, if you find those marguritas, send one my way, I prefer strawberry.
Dawn -
I did manage to make it to church with hair today (Day#20), but it's the last day for me, I think. I've still got lots in the back, but the front hairline/bangs is becoming sparse. I've got a high forehead - and it's getting higher! I'm so sorry Angel, that you are feeling so depressed. It's really not a fun time right now, is it? There's just no way around it, so we have to go through it as best we can manage. I think we all share the shock of our new 'image' that you are dealing with.
As far as keeping them on - I have a little story. At the post office last weekend, I saw a striking black woman waiting at her car. She was wearing a small kerchief-type wrap (with rhinestones!). I just screwed up my courage and approached her, "Do you mind if I ask you about your headwrap?" Of course, she looked at me like I was looney, so I rushed on. "I'm only going to have my hair a few more days and I'll be needing to wear wraps and scarves and don't know ANYthing about them. Yours is so flattering and it appears to be so secure. Could you telll me how you tie it so that it stays on?" She gradually smiled, said "Sure, hon - there's a secret to it," and whipped it off. She had a 'wig cap' underneath it. She explained that this thing gave a scarf something to hold on to - it really does look a lot like the knee-high that MissShapen tried, but without the too-tight cuff. Being the honky that I am, I had to ask her where one purchases such a thing. She directed me to a Beauty Supply/Wig Shoppe down in the 'hood. She even asked my name so she could pray for me.
What an adventure I had! This place had literally thousands of hair extensions, braids, curls, ponytails of every variety and color and yes, wig caps. Two for 99c! (My pkg. says Annie brand, One size fits all Thin stocking fabric Ultra stretch.) I also picked up several inexpensive bows and silk flowers in various colors to put on my hats to try to coordinate colors. They even had the wide, stretchy headbands that I was about to order from tlc at $4 ea. (they show them under hats and caps to help hide 'gaps' at the ears and nape of neck), but they were 99c, too! I got two. This is pretty important to me, as I'm trying to subsist on disability income and my savings.
While I was there, and on my way back, I probably saw half a dozen women with headcovering of some kind. One was even a bright orange wrap with matching shiny orange curls at the back of the neck! Talk about a fashion statement! But it did bring home to me that for some women in this culture a headwrap is a major fashion accessory. Now it never has been for me, but I'm sure going to try to adjust my attitude about it and try to think of my need that way.
All the best,
Lisa -
Lisa - Thanks for that great info on the wig caps. Like Angel, I am also struggling with my gross-looking head and body.
Angel - My heart goes out to you, because I know what an emotional hill you are climbing. I tried to learn how to wear a scarf today, and it kept sliding off my head before I could even tie it. I could have used 2 more hands! I have a pretty wig, but it looks so fake, and I am afraid of losing it when out in public. I'll have to get a wig cap. For now, I will try some hats, I guess. I wore one today, and it was so hot....(I'm in Texas.) We will figure this out or get used to it I guess.
GrammyNancy - My bar appointment on Wednesday is #2.
Take care, everyone....
Marshabel -
Hi, all. Just have a quick question for you. Was wondering what everyone is using the Benadryl for with treatment?
Don't post much of the time. Just read what everyone has to say to get advice and know what to expect. For that, I thank you all. -
So I haven't posted in a while but I am reading each and every post that is put up. I had a terrible 1st week after chemo. I didn't know that your bones could hurt from one end to the other! I got migraine headaches and extreme bone pain that I think was from the Neulasta. But, I felt like calling my Mom and telling her to come take care of me and make me chicken soup but I held out long enough that I was able to get over that! lol
I appreciate all of you who are providing so much information. At least some days I think I want to know what to expect. Then of course other days all I want to do is pretend to be an ostrich and stick my head in the sand.
Today is Day #11 after first chemo for me. I went in to have blood drawn on Friday and they had a very difficult time getting it from my port. They had to stick me twice and almost went for a third. I thought the port would prevent difficulties with finding a vein! Sheesh. Anyway, they suggested going on coumadin (blood thinner) and I chose to wait until my next chemo on 4/11 and let them put some Cathflow in and see if they can resolve it that way. I will have to let you all know about that one.
I still have all my hair but it is a lovely shade of purple now (my children are loving it because they got to choose the color). I was going to let them give me a mohawk but I put it off. That thing about hoping I am in the 1% who don't lose their hair. I am not showing signs of losing it except for periodically, my head will itch like crazy. I guess that is the thing that should make me realize that I don't stand a chance of not losing my hair.
I had my first cup of coffee today since chemo and it actually tasted good. So many things just smell bad to me that it is hard to get a great variety of food past my nose! I am going to stock up on chix soup for the next round. -
Bar Reservations week of April 1 - 7
Monday:
Tuesday: DMKnanny (#2), GrammyNancy (#2)
Wednesday: Angel (#2), Marshabel (#2), LisaSDCA
Thursday: MissShapen (#2), Musicmom3 (#2), Maxgirl (#3)
Friday: MisK (#2), HollyHopes (#3) -
MisK, I believe the benedryl is given to prevent allergic reactions.
PMarsh, so happy to hear from you. I spent the first 28 years of my life in North Carolina, near Wilmington. Love Wrightsville Beach and when I grow up I aspire to be a beach bum. I'm sorry that you had such a hard time with your chemo. Be sure to talk to your onc about your SE's as they could possibly change somethings that will help you. My onc nurse was unable to get a blood test from my port last week also, I didn't think much about it then but now I am concerned...I'll have to see how Tuesday goes when I go for chemo. If you find out anything, please let me know...I will do likewise. Got my fingers crossed that you will be the 1% without hair loss....someone from this cruise needs to be in the 1%.
LisaSDCA, thanks for the wig cap tip! I had bought a couple of really cute hats a couple of weeks ago..well at least I thought they were...they aren't quite so cute without hair. Guess I'll return them...and maybe I can find one of those bright orange scarfs with the bright orange curls.
The hair thing is pretty ugly. When I washed my hair on Friday, it came out by the handfuls. I did still have alot left but it was very bare in front. On Saturday morning I went into the bathroom and just started pulling, any that didn't come out I cut very short with a pair of scissors and I cried and cried. I have had very little pain and someone had suggested using a satin pillowcase to sleep on. I got one and must say it does help. I've always been one to set goals...so...ladies after spending much time with the calendar I've set fall for us to all have beautiful curly hair....just in time to keep our heads warm and for the holiday season. Until that time I will do my best not to look in the mirror and hold on to the fact that this is a small price to pay to get rid of this terrible beast.
Gentle hugs to all....hope everyone has a blessed Holy week.
Nancy -
Ok the cry and pity party is over for me now. Thanks ladies. Just needed to vent I guess. I have tons of hats and scarves and wigs too all lined up. Well my problem was the hat I was using. It was a silky material and just kept slipping. Changed to another one and it was fine. I just hate the fact that my ears are covered in them. Guess I'll go without at home since I live in the desert and the temps here are horrific. I even went out today and wouldn't leave the house without make-up because of the bald head.....lol Had to make myself look presentable somehow I guess.
Angel -
have had a pretty good w/e. feel almost back to normal, even had sex with DH for first time since the SNB and port placement. used a condom, as i'd heard you're supposed to during chemo, so that was weird.
head keeps itching and mouth still tastes metallic, and i'm usually good for at least 1 nap a day, but the stomach pain and painful BMs are gone for now.
took the kids to chuck e cheese this afternoon and then went shopping for summer clothes for them. now i'm wiped out. i tried on 2 dresses, but one showed my port scar, and the other made me look pregnant, so no luck for an easter dress there.
blessings on y'all this week, esp those up for their next tx! i'm praying for y'all! -
i was browsing the ACS site, and found a link to shopwellwithyou.org -- a body image resource for women surviving cancer. i found some links to some new hat places, but they have mast. clothes, too.
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PMarsh - so sorry your first treatment resulted in so many SE. I agree w/ GrammyNancy-make sure your onc knows how you've been felling so they can try some new things to make it better. I made a spreadsheet of my meds and put a comments area in it so I can take a report back with each new treatment to report what happened previously
LisaSCDA - loved your story. There is one of those wig stores down the street from where I work that I would LOVE to go into now - but since I am not working right now and it's 45 minutes away I think I'll wait - I'll have my sister check for me, though - my niece is bi-racial and she takes her downtown to get her hair straightened avery month or so - I'm sure she has a source
Has anyone done the Look Good Feel Better program through the ACS? I am going tonight for the makeup classes, so they can show me how to draw on eyebrows - a new adventure
The bar is going to be packed this week - Happy Hour to all! -
Here's the website for this program
http://www.lookgoodfeelbetter.org -
Playwriter.... I think I experienced some of your stomach pains and painful BM's last night/this morning. I started having searing, shooting pains in my abdomen, then bowel movement after bowel movement. It felt like I had eaten jars and jars of jalepenos, even though I have been trying not to eat hot stuff.
I ate ice cream shortly before this happened. The last time I ate ice cream, I was throwing up. I think that was the last straw with the ice cream. I feel like I've developed some crazy lactose intolerance or something. In reality, I know the ice cream probably has nothing whatsoever to do with flames shooting out my backside.
Hooray for sex with the hubby! I bet it did feel weird to use a condom. You guys should get some colored ones or crazy looking ones to make it fun. I'm glad you're finally feeling better!
pmarsh - that really scares me about the trouble with your port. You know they couldn't even get the PORT in me to start with. All I need now is them not being about to use the stupid thing.
I had a terrible first week after chemo, too. However, I have felt good all most all the time for going on three days now. So I guess as long as we know a break is coming from the agony, we can make it through! I am sorry you've had such a hard time, though.
Lisa- I, too, enjoyed your wig/scarf story and I want to find a store like that!! I am so there with the jeweled scarf or the scarf with hair. Oh yeah!
GrammyNancy - I am so sorry for the rough time with your hair. Sometimes a good cry is what we need anyway. Mine is coming out everywhere and I am getting ready to get in the shower, so I may be bald in a few minutes. I know I'm gonna cry, too. I'm not that pretty to start with and doing away with the hair isn't likely to improve me.
I have things to do... errands to run, calls to make. I actually feel like doing it all!!! *cartwheels*
MisK - Thanks for checking in. You need to post more!!
Wishing a wonderful week to all... especially those at the bar.
Miss S -
hi girls.
My hair is just starting to shed. No much but I to know I am not the 1% now. I know I will cry as I love my hair and have hid behind my bangs at times. Just a short note now as my 17 year old daugher woke up with pain down there and in her very lower abdomen. Not sure what it is but we are on the way to the doc. I will updater you all when we get back. I am praying it is nothing. WHen I was 19 I had a horrible pelvic infection that put me in the hospital for a week. When I was in the hospital they did my first pap and that is when they found out I had vaginal wall cancer. I am sure she is fine jsut brings back memories.
talk to you later.
Melissa -
Melissa
I hope your daughter is OK. Will say a prayer for her......
Diana -
Quote:
Bar Reservations for week April 1 -7
HMonday:
Tuesday: DMKnanny, GrammyNancy
Wednesday: Angel, Marshabel
Thursday:
Friday:
Drinks of choice will be served!
Hey add me to the bar list on Tuesday. 4th Taxol of 12. No hair loss yet...Just a little tired by Fri.
Bettye -
Bar Reservations week of April 1 - 7
Monday:
Tuesday: DMKnanny (#2), GrammyNancy (#2), Bettye (#4)
Wednesday: Angel (#2), Marshabel (#2), LisaSDCA
Thursday: MissShapen (#2), Musicmom3 (#2), Maxgirl (#3)
Friday: MisK (#2), HollyHopes (#3) -
Playwriter, happy that you are feeling well enough to have a little hanky panky...you go girl.
Whitecotten, sure hope your daughter is okay...sending prayers your way.
MissShapen....hope that tummy settles down real soon...sending you positive energy.
Bettye, good to hear from you....will be thinking of you tomorrow.
I got a new wig today...and like it alot more...so that is my positive for today.
Nancy -
Whitecotten...I hope everything turns out ok with your daughter..Hugs..rosebud
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Hope all goes well tomorrow DMKnanny, GrammyNancy and Bettye, I'll be sending happy thought your way. I'm off for a cbc Tuesday and then I belly up next week Tuesday the 10th for my 2nd round. We'll get through this yet..HUGS Rosebud
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hi,popping over from the April group. Has anyone here had an allergic rct to taxotere? Couldn't complete chemo today, could you please share your exp?
Also,wanted to share a cool headwrap site: www.designwraps.com
Melissa,praying for your daughter.
Tara -
Playwriter: so glad you're feeling better!
Lisa: Thanks for the tip! Never would have thought of a beauty supply place. I have one near home and I'll be hitting it for sure soon!
Whitecotton: sure hope your daughters okay. Prayers going out to her and your family.
First two days after chemo were not too bad. Today I've got a filmy taste in my mouth and nothing tastes good. My upper lip is a little swollen and my mouth is sore and I'm tired. But I know it could be a whole lot worse, especially after reading what some of you are going through, so I'll stop whining. :-) Feel better this afternoon than I have all day, so I'm hoping I'm on an 'upswing' here for the rest of the week. -
Okay, so this is the first time I have heard that you should use a condom during chemo. Is that just to prevent pregnancy? I actually have managed to have some hanky panky twice since surgery!!!
When I went in to get blood drawn last week, I talked to the onc's nurse and have already been told that she can pump me up with additional drugs to get me a few more days before the major nausea. While she is pushing the drugs this time, I will also talk to her about the se's from the Neulasta and see how I can manage them better. But it is for sure that knowing there is an end to it makes it doable. I think the first time and not knowing makes it pretty hard. Since I am bellying up to the bar every three weeks, that gives me about 10 days between each treatment that I don't have to be stuck, poked or prodded by the plastic surgeon or the oncologist. That in itself makes it doable.
Today is day#12 and my hair isn't falling out like crazy but I do get a few more in my hand when I run my hand through my hair. I probably won't be one of the lucky 1% so I guess it is time for the mohawk!
I planted flowers today. I am so tired now that I can't hardly stand it but it was the one thing that I had to do this year in my yard. I may not be able to mow my lawn and it might get a few feet tall but at least the flower bed looks good!
Melissa, I am sorry to hear your daughter is having problems. I know that it is harder to see your kids be sick than to be sick yourself. I have and will say a prayer.
I hope that everyone at the bar doesn't get too messed up this week.
Thanks to everyone for sharing their experiences. It helps so much.
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