TE TROUBLE

ren - sounds like you got great info on a number of fronts - isn't it nice when our questions get answered?  So kids don't get "teenage acne" they get "pubescent epidermal inclusion cysts"?

mrochon - glad to hear all is ok.  Had not heard about the castor oil, or its apparently many uses!  I may need to put some on my head if it regrows hair!!!

I read Olive Oil also helps with hair regrowth.  Haven't tried smearing any on my head though.

Excited to hear my surgery may only be an hour tomorrow!!  That might really help with the side effects. 

Special K....my nerve damage was to my right (dominant) arm.  I didn't realize how dominant it was.

jblcsw10 - just want to warn you about the first look without the TE - mine looked like a raisin.  It may be even more pronounced for you because you were more expanded than I was.  You will get used to seeing it faster than you think, it will be ok, don't worry.  You all may think this is weird - I never let my husband see it.  We are exceptionally close - he bathed me after the other surgeries, cleared my drains, etc.  I knew the loss of the TE was going to be temporary and once he saw that side he couldn't "unsee" it, so I just didn't give him the option.  He tried to tell me that it didn't matter, but it mattered to me.  He understood but I think he didn't want me to be afraid to let him see it.  The whole point of NSS BMX was to try to look as normal as possible - I didn't want to negate that.  As I type this I sound shallow to myself, but I just felt strongly about it.  

 Also, I was aware of the overfilling.  Pretty standard, most PS do it.  I will stop at whatever point I think is enough, even if I don't reach max capacity of the TE.  I am not willing to risk more problems. PT is the bomb diggety - I went yesterday. Gentle stretching and massage - I love it.  It really does improve range of motion in the shoulders and I don't think I realized how tight mine were until I started to try to stretch them out.

 Also, on the prosthetic front - Nordstrom lingerie department has trained fitters. They sell prosthetics and will set up the insurance billing for you. They will sew a prosthetic pocket in any bra they sell for free, also possibly in bathing suits (I just found a cheapie one-piece bathing suit at Marshall's that had the removable pads in the cup). I also have a link to a demo for how to sew a bra pocket with a piece of t-shirt fabric if you have your own sewing machine.  Let me know if anyone wants it. 

jblcsw10 - there is also a store in Largo that has mastectomy bras and prosthetics that is very good. Someone I know from here in Tampa that is temporarily without an implant on one side went there and said it was great.

Thinking of you chickadee!  Goodluck!

jblcsw10 - You'll be ok. It was disappointing when I had my TE removed and I was apprehensive about looking at it.  When it comes down to it, it wasn't anything compared to looking at what was underneath the bandages after my double mastectomy.  No new scars, in fact my PS was able to make it smaller.

I don't know if I mentioned on this thread that I have no problem flashing anyone who wants to see.  For me it takes the stigma away and I'm able to look at it as any other inatimate object.  In fact I just came from my bosses office, she's been out on maternity leave.  Closed the blinds and door and lifted my dress!

Also, do you have a project manager associated with your insurance group?  I had one.  I wasn't aware they had them.  She called me.  She got me set up with the prosthetic suppliers in my area.  I made an appointment and the supplier took care of everything for the insurance.  I went through Hanger.  They will measure you and fit you for bras and prosthetic.  I also was fitted for compression sleeves to use when I work out.  But I don't like them so I don't wear them. They seem to cause the problem I'm trying to prevent!

I'm still on my castor oil search.  I tweeted Dr Oz about it and am hoping I get a response!

Michelle

So Renn- sounds like you are still a candidate for TE then implant?  Any timeline?

All - I saw the new PS today who confirmed that I am no longer a TE then implant candidate.  I took my friend who was diagnosed 3 weeks before me with me and we both like this PS a LOT.  Very straight forward and forth coming... loved loved loved his PA. And he is a year older than I am (I am 51) -- the current PS was born in 1975 -- nothing wrong with that but he is still a bit of a baby.  and the new PS has a young partner who assists with the surgical team during the operation. 

I have another appt with another new PS on the 20th that I will keep - and then compare.  I think I am ready to move on from my current PS (breaking up is so hard to do - tra la la!)

Justv- good for you for seeking out a second opinion/new PS. I know its important we take charge but I am not always so good at being assertive with doctors.

Special K - I agree you are NOT shallow. I have been feeling like I don't want anyone to see what this looks like right now. I am afraid to look myself! Just got back from buying some bandages/tape so now I am ready to do it - maybe in a few days...I did take that shower today but managed to cover the bandages and keep them dry so I didn't have to remove them. Big chicken.

To top off this bad week, my almost 12 y.o. wheaten terrier died last night. Ugh. I have been crying on and off all day and I suspect I had a lot of pent up feelings from losing the TE as well that finally came out, all tumbled up with my grief over Scooter. He was a good dog. He died quietly and peacefully in his bed at home last night.

jane - so sorry about your pooch.. i do not even think about it with mine because i simply cannot.  they are totally part of the family and such wonderful friends.  my heart to you, girl..

mich - i know - it's like doctors take the place of our parents or something... may be the fact that we are so often in compromising positions with them.  this PS had me in two small black triangles of material with straps that was supposed to be 'photo' underware and my shoes, for pre-op pictures.  oh. my. gosh.  then he said he knows it is uncomfortable to be half naked, to which i replied - 'half naked - this is like 90% naked - maybe if i were a kardashian i'd be half naked'.   hard to get the upperhand after that.....LOL

justv - nice!!!  This PS sounds fab!  I have to say I did get a mental picture of the underwear and shoes deal - I started laughing - not at you but with you!  I read something funny on the "you know you're a BC patient when..." and it stuck with me.  You know you're a BC patient when you go to the dentist and get in the chair and unbutton your shirt.  I did have BRCA testing on the day I was diagnosed, thankfully I was negative.  I am adopted so they wanted know because I have no access to family history.

jblcsw10 - look under those bandages when you are ready.  I am so sorry about your doggy.  I had a 17 year-old cat that we had to put down 18 months ago - loved that cat like another child.  Awful to lose him - I know exactly how you are feeling. 

Oh my Specialk _ That is really horrible. I did get a letter from the place I had my MRI, same kind of form letter, but I didn't have my surgery there so I don't expect them to know what happened...yet I still found that letter upsetting. So I can appreciate how you're feeling now.

thank you all for the support regarding my dog. I feel better today but sad, of course. Trying to keep busy. Thanks also for acknowledging the difficulty of "the unbandaging". I'm not sure anyone else can understand. Tomorrow I plan on rebandaging after my shower, I can do this!

Have a nice weekend everyone.

chickadee - I had the spectacularly bad luck to be diagnosed 3 days before pinktober.  My letter was because I had the last MRI on Sept 30th, 2010.  It was interesting because they were referencing me specifically in this letter.  They had my last MRI date in it - indicated I needed a mammogram done on my left breast - as if they were aware of the cancer on the right (they did the US guided biopsy and received my diagnosis) which I found presumptious, like they assumed I had a lumpectomy.  On the phone they claimed it was the BS office bad - they never got back to them to say I had a BMX.  I def humbled the person on the phone - I hate doing that but I fear for the next person who gets one of these letters who is very emotional about it - that is not right!  YAY on the surgery - glad it was quick and they got a decent surgical fill.  No drain is a bonus!  And go get a free lunch - I think we have been diligent enough on the screening diagnostics!

chickadee - only some slight bruising with this last replacement.  I was pleasantly surprised by the lack of bruising and/or trauma to the area, even on the incision line.  I do have a little on the corner parts of the new TE because I am so underfilled.  Of course, I was quite bruised after the BMX so by comparison this was cake.

jblcsw10 - Hi!  Glad you got past the looking part - I know that was hard.  I think especially so because of your fully expanded other side.  The disguising will be hard and I do think you will need go the prosthetic route.  I will go with you anywhere you want to go shopping for those items if you would like me to.  Just say the word - I will come pick you up, or meet you anywhere.

There are some bars that I got at Sam's, GNC has them, and I think Publix has them - called Detour Protein bars.  They taste pretty good for a protein bar - kind of like a Snicker's bar.  They come in 30g and 15g.  I always lost my taste for carbs and experienced decreased appetite when I did the South Beach Diet.

I am happy to say, no foreign objects left in my body! I didn't have much time to dwell on what to do...made a last minute decision to have both TEs removed. Came home today and is sooo sore, but those Percosets are pretty awesome...Hoping to heal physically and emotionally this time, maybe 3rd time's a charm. Does anyone have a Facebook? I live on there...add me! Maria Petersson Santarone