Dis Breast Cancer Survivors - GAGWTA!

[Shugardrawers]

http://www.paulayoung.com/

Pretty wigs, affordable and the nicest customer service people ever. If you run a search on whisper lite (or light,not sure) those are the greatest! The fiber is much thinner and much less "wiggy" than anything else I've seen. I've ordered a couple and love them!

 

[disneylizzy]

Lessa: My wig did not hurt. I went to a place called PK Walsh in Needham, MA. They are the best. Kind, caring, but very expensive. My wig was $650, of which $350 was covered by my medical insurance. I felt like it was worth it, getting the wig was what I stressed out over more than anything else. It did get a little hot, though, and I was always glad to whip that sucker off when I got home. I had two little soft beanie things that went under the wig.

Another great thing to look into is the "Look Good, Feel Better" program. They had a meeting monthly at my onc. office. I am not generally someone who wears a lot of makeup, but during chemo I penciled my eyebrows, wore eyeshadow and eyeliner and everything else.

Take everything one day at a time. Don't push yourself too much. Let other people help - it makes them feel better.

Debbie: I guess I still wake up and think "I had cancer" everyday because I never had reconstruction. Got to put myself together every morning, if you know what I mean. I'm 4 1/2 years out and I still wonder about doing reconstruction. I have heard that sometimes women aren't happy with it. I am also heartily sick and tired of any and all medical procedures. I don't know - anyone else have any experience with this?

Pea n' Me: Those are two of the gosh darndest cutest twins I have ever seen!

Lori: Oh, yeah, another hockey mom in the making. At least you can probably rest assured that your DH will take the 6am games and the tying of the skates since he is a hockey nut. I am very jealous of moms who have involved hockey spouses. My DS12 has finally reached the age when I can drive up to the rink, drop him off and come back when practice is over or the game has started.

Tinkertude: Way to go with the pink stuff!! I just saw the Longaberger catalog and they had a very cute basket with pink ribbons on either side.


GAGWTA!!!

 

[InnerStrength]

Hello again Linda!!!

Yes, I finally made it over and thank you for the invite! Your twins are adorable yet do not look alike at all. Perhaps 1 favors you and the other your DH? Their smiles in that photo are contagious. I do not think my 2 look like brother and sister either and will post a picture as soon as I can figure out how to do so.

Wow, your story about your dog hit home for me. I have a 13 y/o Shih-Tzu (my first "baby") who is undergoing some medical problems at present, and yesterday when my DH picked her up at the vet, he (vet) mentioned the possibility of cancer! I was floored. She is being treated for a skin infection that is very common in puppies but not in elderly dogs, so the vet believes she "caught" it because of a diminished immune system. I have never had to have a dog put down and dread the day that I have to do it. She is part of our family and even though she is certainly no puppy anymore, is still loved and cherished. To see her uncomfortable bothers me more than any ill effects of Taxol does on me. I guess it the "mother" in me.

Hello Debbie,

You also have a beautiful family. Thank you for the welcome. You also have been through so much and I sense a positive attitude from you- to me that's half the battle. I am very encouraged in reading your story as it appears that you have had great results with Herceptin. I hope to have the same once all of this is behind me. I joined a clinical trial and was welcomed into the Herceptin arm, so the plan for me at present is weekly doses for 1 year. After that, it's anyones guess - however I hope the year does the trick.

I was very "anti-port" at first as I was grossed out at the thought of having an appliance in my chest wall, but boy I am glad that I was convinced otherwise. It sure makes me happy to have it on my infusion days when I look at all the other patients with their limbs wrapped in warm towels and chucks, and my Onc. nurse just accesses my port with 1 stick - no problems. I do use EMLA cream 1 1/2 hours prior to the needlestick as it does a great job at numbing up a few layers of skin above the port. I knew the surgeon who placed my port (I am employed in the medical field) and joked with him in pre-op to "spare no expense". He did an awesome job and the port is so flat - if it were not for the 1 1/2" (fading) scar above it, no one would even know that it was there. I hope it holds out for a year or as long as needed.

I also remember the odd, uncomfortable feeling of when my hair was begging for a pardon as though it was yesterday. That pain was only on my head though. The only other hair that I mourn is that which is currently vacating my brows and lashes - the other "hair" has always been more of an annoyance to me anyhow, and not having to shave my legs and underarm regions has been a perk. Thankfully it is summer and I have been sporting some lovely "Jackie O" sunglasses along with my glamourous wig with bangs - a nice "disguise" for my missing brows, LOL. (Hmmm, just who is that mysterious gal ???). With wig and glasses on, I am "Hiliary", which is the name that came with my wig. Might as well have some fun with it ...hey, at least my wig's "name" was not "Hortense" or something. No offense to anyone named Hortense of course,

Hello Lessa of Pern,

I have never heard of Pern but am a big fan of all of the Star Trek, Star Wars and any other alien movie out there...does that count?

I hope you will be up to a trip after chemo...that is my plan also. I am currently on a LOA from work and will be returning after the holidays, so this will be our last "big" vacation for a while as I am in college as well. I am also concerned about traveling, however it was my Onc. who suggested a trip after chemo and that is what put the idea in my head. As is gets closer, I will drill her about the risks of lymphedema and ask her if she feels a compression sleeve is in order for the flight. Better to be safe than sorry....


Lori

 

[Laurajean1014]

Linda - The children are beautiful!

 

[Pea-n-Me]

LOL, my wig was so nice I had people say they liked my wig better than they liked my hair. That didn't make me too happy since I'd always taken great pride in my hair. So just make sure you get a good one.

I agree my head did become quite sore for several weeks during the time I was losing and for a couple of weeks after I lost my hair. My SIL who's a hairdresser gave me some Tea Tree Oil Conditioner from Paul Mitchell which I used on my scalp and it helped a little. But I was able to wear my wig right away. I think this is because the wig I wore was extremely comfortable with a soft cap and netting. Not tight at all. Yes, after a while I couldn't wait to get it off my head, but I was able to wear it to work and out and about without a problem. I always wore a wig in public; at home I wore lovies and a bandana with a built in lovie which were pretty much my staples. There wasn't much I didn't do while I was going through treatment - pretty much did everything I'd normally do socially anyway. Again, a tribute to a great wig.

Can I just say that several weeks ago I was at my radiation center for follow up and a huge SUV pulled up and I saw a flash of jewelry go by in the driver's seat. Out jumps this woman who was totally chic and beautiful - all dressed up, makeup and jewelry on, pocketbook slung over shoulder - and a totally bald head - obviously on her way in to radiation. She walked in like she owned the place and I was so impressed!! Had I not been in my car already I definitely would have said something like "You go girl'!, she was so cool! But the secret was in her self confidence. Personally I could never have done it, but that day she was definitely my hero. I give any woman who can go out completely bald a lot of credit.

 

[InnerStrength]

Lessa Re: wigs,

The only time mine really annoys me is when I have a headache and when I am out and about with it on and it is HHH (hazy, hot and humid). Then the wig feels HOT and my scalp perspires quite a bit. Other than that, it does not hurt and I wore it 2 days after my hair was officially gone. I went to a boutique at Dana-Farber in Boston MA, and although the wig was pricey ($400), it was worth it to me and as an added bonus, was paid for in full by the "cranial prostheses" rider in my health insurance. If you have such a rider under your health ins., be sure to ask your Dr. for a script for a "cranial prosthesis" due to chemo, and not just one that states "wig for chemo" as some ins. companies require specific wording in order to compensate.

I know how you feel about looking your best for your upcoming daughter's Bat Mitzvah. A very dear friend of ours is getting married in 2 weeks and DH is his best man. I cringe at the thought of being a guest at such an important day in his life and sporting a wig, penciled in brows and glue on eyelashes! On a positive note, I have indulged in a little sun and have some decent color, so at least I do not look ill and pale. At least there will be no proof that I was there looking freaky since I will be FAR FAR away from any happy-go-lucky photograpers or videographers! I don't know what type of treatment you will be getting, but my lashes and brows are still hanging on for dear life (as they thin considerably), so there is a good chance that yours will still be okay in Sept.

Side note to Linda: Kuddos to the fashionable bald gal! I give her a LOT of credit. I am WAY too vain to ever go public with my bald head in the spotlight. I either wear my wig or my HipHat hair under a hat which looks like real hair (it is 100% human hair). I'm sure the world sees me and knows I am bald (hey, I think I can spot even a good wig a mile away), but no one will be seeing my "bald beauty" - that is my new nickname that my kids thought up for me (thanks kids). *sigh*

Lori

 

[MerryPoppins]

I never had reconstruction. Got to put myself together every morning, if you know what I mean. I'm 4 1/2 years out and I still wonder about doing reconstruction. I have heard that sometimes women aren't happy with it. I am also heartily sick and tired of any and all medical procedures. I don't know - anyone else have any experience with this?

I had an extender inserted when I had my mastectomy and right breast reduction in 2001. Two months later (after all those saline injections) my plastic surgeon decided my extender had burst and needed to be replaced. I'd need surgery to replace the extender and then later another surgery to remove it and do the actual reconstruction. At that time I was sick of surgery. The thought of maybe having drains again made me cringe. I asked the nurse that worked for the PS if this happened often and she shrugged. Not usually, but at my age I could pretty much count on my saline implant needing replacement in my lifetime. I didn't like the sound of that. Don't know why they don't tell you these things up-front.

And I'd decided I didn't mind the new me as much as I'd thought I would. I had the extender removed. So now I have a prosthesis. I started out with special bras, but hated the granny type bras I'd found. Now I wear regular bras. They work fine if you find the right fit. I named my prosthesis Betty **** (okay that won't get past, so think Betty Boop). I gave her a funny name to make my kids laugh. They needed to see humor in our situation at that time. I wear "her" when I go out and often around the house. Sometimes, around home, I go without. I used to lose her all the time, hence the nickname. I'd tell the family, "I've lost Betty. Everybody search!" I'd be glad to answer any other questions you might have. I know others who have had wonderful luck with reconstruction, but I just decided it wasnt' for me. Too many unnecessary surgeries.

 

[Disney Debbie]

Hello Debbie,

You also have a beautiful family. .......................As is gets closer, I will drill her about the risks of lymphedema and ask her if she feels a compression sleeve is in order for the flight. Better to be safe than sorry....


Lori

Hi - thanks for the compliment!

Re Lymphedema - be VERY proactive on preventing and treating that yourself. Of my 3 cancer docs - oncologist, surgeon and radiologist the only one who really addressed the possibility of it was the radiologist. When I started noticing swelling I kind of freaked because at first it was itchy and I thought the cancer was back so I went immediately to the onc - (who is not the one I went through my treatment with - she's at a different office now) and he said I had a slight case of lymphedema. When I asked what I needed to do - he was very nonchalant about it and said I could wait a while and go to therapy if I wanted or I could go ahead and go now. I asked if it would clear up on it's own or get worse. He said it would get worse - so why on earth would I want to wait??? I just don't think enough emphasis was put on how important it is to catch early - and how much BETTER it is! Anyway - I immediately went to therapy and pretty much reversed what little had started and was taught how to wrap and massage etc and fitted for a sleeve. The therapist told me she was very glad I'd persued it because she usually gets people when it's too late to reverse it.

I guess the bottom line is - and you've probably already learned for yourself - your health is up to YOU - and if something doesn't seem right - don't let them talk you out of it or make you feel you're making a big deal out of nothing!

 

[jamounger]

I have been lurking in the boards for a while planning a trip that we are leaving on Sunday 8/7 and just found this. It has made me feel better already. I found a lump right before Mmorial Day and went from never being sick to being a cancer survivor in just a few weeks. I am 45 years old. I did well with a lumpectomy and had negative nodes though they were unable to find a sentinel node. I qualified for Mammosite radiation and let me tell you it is a walk in the park. 2 times a day for 5 days instead of 6 weeks. i started chemo 2 wks ago and today my hair started to fall out. i am getting it shaved tomorrow morning so I don't have to deal with it at Disney. i am having a little trouble with the bald thing but have a good wig and scarves already lined up. Wish me luck as I will be the new bald lady at the magic kingdom next week.

 

[Pea-n-Me]

GAGWTA!

Thank for the complements on my kids. Guess I should post pics more often.

I had a bout with lymphedema this winter and spring. What a pain to have to go to PT twice a week and have it massaged and wrapped, etc... In looking back I realize it happened just after our January trip to Disney so I'm pretty sure I have the flight to blame (along with the salty/unhealthy food I ate on the MYW Dining Plan, LOL). From now on I will wear a sleeve on my flight under a sweater or something. I sure don't want to go through that again. It took 4 months to resolve but luckily it was a very mild case. I was surprised how much my arm hurt, though. Very achy.

 

[Pea-n-Me]

welcome jamounger Last time I was at WDW I saw two mothers of young children with bald heads under baseball caps. I gave them a lot of credit for being there. Have a wonderful trip, glad you found us.

 

[laurabelle]

GAGWTA!
I'm having a wacky/good day all at the same time...I finally got to book our Oct trip this morning, airfare MNSSHP tix and booked a room at POP (1st stay there) but hubby is staying home due to work, so I'm a little bummed about it. The girls and I went alone last Jan and had a good time, we'll miss him though, esp. during the Food & Wine Fest! I'm hoping my sister can join us...we'll see. Other health issues are causing me some grief and I really would love to just never have to visit a doc again...it's one of those days...It's also the anniversary of a bc friend's death and I found out today that her hubby is in love and remarrying. She left behind an 11 & 15yr old. I'm happy and sad all at the same time (plus apparently being perimenopausal doesn't help!)

Welcome Lori and jamounger!

 

[MinnieM3]

LOL, my wig was so nice I had people say they liked my wig better than they liked my hair. That didn't make me too happy since I'd always taken great pride in my hair. So just make sure you get a good one.

I agree my head did become quite sore for several weeks during the time I was losing and for a couple of weeks after I lost my hair. My SIL who's a hairdresser gave me some Tea Tree Oil Conditioner from Paul Mitchell which I used on my scalp and it helped a little. But I was able to wear my wig right away. I think this is because the wig I wore was extremely comfortable with a soft cap and netting. Not tight at all. Yes, after a while I couldn't wait to get it off my head, but I was able to wear it to work and out and about without a problem. I always wore a wig in public; at home I wore lovies and a bandana with a built in lovie which were pretty much my staples. There wasn't much I didn't do while I was going through treatment - pretty much did everything I'd normally do socially anyway. Again, a tribute to a great wig.

Can I just say that several weeks ago I was at my radiation center for follow up and a huge SUV pulled up and I saw a flash of jewelry go by in the driver's seat. Out jumps this woman who was totally chic and beautiful - all dressed up, makeup and jewelry on, pocketbook slung over shoulder - and a totally bald head - obviously on her way in to radiation. She walked in like she owned the place and I was so impressed!! Had I not been in my car already I definitely would have said something like "You go girl'!, she was so cool! But the secret was in her self confidence. Personally I could never have done it, but that day she was definitely my hero. I give any woman who can go out completely bald a lot of credit.

I could not do the wig thing. Looked like a dead animal on my head and I got a good one and had a cancer trained stylist fix it. No go. While I was still teaching I wore hats. really cool fancy hats! I told my students they could bring in hats and wear them too in class! They loved it!

I went bald much of the time. I did look confident and I wanted to put a face on someone going through cancer that was not old and sick. I got used to it. Always had a huge smile on my face. That's one aspect of getting through my cancer that I'm really proud of, although that sounds weird.

Long day....sorry to run on but wanted to peek in. Start school tomorrrow, inservice at 8am. I'm' tired just thinking about it.

 

[Lessa of Pern]

I'm glad I joined this conversation!

I wouldn't have the self confidence to go bald.

for the bat mitzvah I didn't buy a dress, I bought a DRESS! I'm hoping people will look at the dress and not look so closely at me...

 

[snappy]

I'm glad I joined this conversation!

I wouldn't have the self confidence to go bald.

for the bat mitzvah I didn't buy a dress, I bought a DRESS! I'm hoping people will look at the dress and not look so closely at me...

Glad you joined too, Lessa of Pern. What does your DRESS look like, it must be something.

GAGWTA!!

 

[Laurajean1014]

GAGWTA to everyone!

 

[snappy]

Hey, everyone!! GAGWTA!!

It's my DH's and my 27th wedding anniversary today.

We met back in 1969, if you can imagine that.

He is a great guy and a wonderful father.

He has been there for me when I needed it since last April.

We're going out to dinner tonight and celebrate everything!!



Hope everyone has a beautiful Friday!!

 

[laurabelle]

Happy Anniversary! You and hubby have alot to celebrate!!!

I just put in a call to my PS' office. I had my tattoos redone on Wed. and I'm bandaged up until Sun. with these waterproof bandages. Well this morning it looks like either I'm leaking blood, or the bandages got wet somehow (I can shower, no bathing) and the old blood on the bandage is wet and leaking. ugh.

GAGWTA!

 

[Lessa of Pern]

happy anniversary!


the DRESS....

well, it's a floor length gown with spaghetti straps, with a matching jacket.it's a navy fabric with beadwork over the entire gown.

I bought strappy little shoes, which I'm going to have dyed navy to match.

 

[snappy]

That dress will take their breath away, You go, girl!!!