June 2010 Mastectomy

1WonderWoman

JSmiley: NO MORE ACE BANDAGES!!!!!!!!!  YEAH!   You are doing great and I am so glad your BS sent you to a lymphedema specialist.  I had 18 nodes removed and my left ankle is a little swollen oddly enough but no one has spoken to me about going to a specialist for the do's and don'ts.  I am going to ask so thanks for sharing that.   You sound like you are doing great and good for you

Orchidgal: my heart breaks for you that it is raining in Santa Monica!!!!!!!  Oh rain, rain, go away!  You poor, poor girl!  Believe it or not, and to your point on generics, George W. Bush re-wrote the Americans With Disabilities Act to explicitly include cancer patients in Sept 2009.  I also feel some legislation/act/healthcare reform should be in place where cancer patients should not even have to deal with generics at all due to the very murkiness of the market as a whole.  We should be automatically getting brand name meds and much like you, and I am sure most of us feel the same way, you don't really mind the higher cost because we are not going to be on these things forever.  I am very concerned as to what they are using for "fillers" but that is the combination of the medical industrial complex combined and drug manufacturers being advantageous under the aegis of capitalism.   Punks...we have cancer dammmit!

Reneemac: I have been sleeping on my left side for a while and I think I caused the TE on the left to slide more toward my underarm so I tried to correct that this evening by moving onto my right side in hopes to make it slide back.   This is also why I am up at 2AM as it takes time to get adjusted to a new position.  There are a few things that bothered me about what you wrote: First, you should speak to your PS and let them know when you feel comfortable instead of being told you are going back.   You are not even sleeping in your bed or getting a good night's rest so how could you possibly be ready to go back to work?  In addition, I think you need to find comfort in your home...do you have a spare bedroom?  A spare bed?  Even a place where you can blow up an air mattress?  My friend in NYC was unable to get comfortable in her bed after bmx and found an air mattress worked.  I understand your husband might like his side of the bed but you are, after all, recovering from a massive surgery stemming from breast cancer.  The warmest and most sincere {{{hugs}}} to you.   I feel for you.  You don't have to go back to work then back on disability if your exchange seems to only 1 fill away.  I would talk to your PS.  Explain how you feel and what you would like to see happen here and I am sure they will work with you.   Women with bc have it hard enough without additional, man-made complications.  I wish you the best-

Liz

RobinLM

Laurie, fantastic news....so pleased for you  How was Shutter Island?

Almagetty, WOW such a lovely positive post, you are doing just great.

Ducki, you have a great sense of humour, espcially like the dressing table comment A bit of humour helps doesn't it...

Still waiting to be given a date, pretty frustrated right now.

Robin

jsmiley60

RENEEMAC: Girl that's awful that you can't sleep comfortably in your bed! Have you tried using lots of pillows, a body pillow or anything? Maybe sleeping in a different bed or on an air mattress as Liz suggested???

I've decided that getting the saline fill has made my "breasts" feel tighter. It is especially weird feeling if I lean forward or bend over. I guess I will get used to it............I have to keep telling myself that this is only temporary!

MRDRN

Orchigal Thanks  and thanks to ALL for your active posts here.  It helps me to read about everyone's journey's

The pain I have is still here, mostly at night and the belly incisions from the DIEP are not hurting as much as the underarms like most of you say...related to activity.  I am pacing myself, but still trying to get the exercise i need.  

The hospital I went to had a very specific "Motion Plan" than I keep referring to which outlines phase 1 and phase 2 exercises.  And I know that my pain is normal which helps.  It says "because nerve endings grow slowly, it may take six months to a year to regain normal sensation"  ...and my numbness/tingling and pain goes down to the elbow.  

At night when I am lying down, the inside of my breasts feel like they are on fire after I wake up from a deep sleep on my side...I am constantly tossing and turning but it is getting better.  Advil PM with Vicodin (PROB GENERIC!) only holds me to a three hour sleep interval.  I KNOW it will get better.  

BEST MEDICINE?  I hired a gardener to come help me weed !  The garden looks so much better!  I am excited to be sitting here inside the A/C and grateful to have the outside help

Here is to happy healing everyone....try to get your family to do all those things that you normally have to stuggle for!   You have a good excuse!!!!  

reneemac

Thanks ladies for the suggestions. I actually slept in my own bed last night and woke up at 5am to use the bathroom, then spent the rest of the time in the recliner. I have an air mattress and I am going to try that tonight.

Part of my concern with all of this was that the general surgeon had only disabled me through June 22, when my surgery was June 2. The State of California disability office is difficult to get through to, but today the automated system told me that they are paying me for 17 days - June 22 through July 7, so the GS must have completed the disability paperwork to extend. My company has a supplemental plan that has been wonderful - I am actually making around the same amount as I was when working, so I feel really blessed!

I have a list of questions for my PS when I see him on Tuesday. I have read on here that the exchange surgery can occur anywhere from 2 weeks to 6 months after the last fill, so I want to know what his standard is so I can prepare. If it's only 2 weeks, I'd prefer to stay disabled until then. If not, I can understand having to go back to work and then out again. My employer follows FMLA and I have used 6 of the 12 weeks thus far, but then again, I am the HR Manager for my area and never received a FMLA letter and doubt that they would hold me to the 12 week limit.

I have been achy for a couple of days. I think it's because I went through my 8 year old daughter's room, cleaned and purged the toys that she no longer uses. It looks great but my muscles ache. I also started my exercises this week and that's bound to be part of it.

I took my tamoxifen this morning. I am hoping for no side affects but we will see.

Thanks again, lovely June ladies. I love you all!

almagetty

Reneemac: I'm dragging my feet a bit about the Tamoxifen. I'm set up to see a different oncologist on Monday to see what he has to say about it. For us Unilateral girls, it seems to be a bit of a gray area, whether we should take it or not. I  have a sneaking suspicion my second opinion will be the same as the first, only because it is much "safer" for them to have you take it than not. The side effects scare me though. I only had to take medication on a regular basis once before, when I developed high blood pressure. I was truly miserable the whole time I was taking it. I suffered from every single side effect listed for the pills. Thankfully, the elevated blood pressure was caused by excessive weight and when I lost the weight, the BP went back to normal.

Oh, the joys ...

Getty 

speech529

Almagetty  Gee, I am a "unilateral girl" and I had not heard that about those of us with 1 breast gone.  My dx is very similar to yours except my lesion was smaller.  I have strong family hx of cancer (breast, ovarian, colon, stomach, etc) so now I wonder.  Well, I see the oncologist tomorrow morning, so I'll know soon enough.  I have no ovaries so maybe that will be enough for the docs to let me off the hook.

Right now I am focused on this drain coming out.  I have been a couch potato since Tuesday afternoon and only left the house today for an eye appt.  My drain levels have gone down quite a bit since then.  Yesterday was 21.  This am was only 8 (it's been 12 to 15 in the am for the past several days).  So here's hoping the drain can come out tomorrow.

Wishing everyone a better rest tonight and continued healing on a fast track.  Take care, June ladies!

Laurie08

ok- I just typed this big long thing and it is gone?!  Lets see how far I get this time.

Jeanne- So glad your ace bandages are off, I don't know how you put up with them for so long!  So happy for you

Renee- I hope you get some sleep tonight and that the work thing....well.... works out for you.  It sounds as though you may be better off going back for a bit and then stepping back out for a brief time for the exchange.  What a pain though to have do the paperwork twice.  You sound on top of it all and I am sure you will get a good game plan going with your dr's.

MRDRN- Good for you for hiring a gardener!  I am so impressed!  I hope your comfort level increases, your attitude is wonderful, so I hope you are rewarded with some comfort tonight!

Getty- Good luck with the Tamoxifen thing, let us know when you make a decision.  My Dr said we still need to have a conversation about it....not sure why?

So I called my PS office on Tuesday to get more pain meds and they acted like I was a junkie.  Why would I need those?  DO I know they are a narcotic etc.  SO I called my BS office and they gave me prescription immediately no questions asked.  When I had my appt Wednesday at the PS I asked what the heck the big deal was?  They said at this point I should be managing my pain with tylenol and celebrex and only using narcotics to sleep at night.  They try to be pro active in helping me to not form an addiction.  WTF?  Ok.  So this morning I was bitching about the PS nurse again and my SIL was here, and she pipes n and says "maybe if you stayed in bed and tried to heal more, you wouldn't need the pain meds, maybe their right."  ummmmmm.....okkkkk.  So- today I have only used extra strength Tylenol nd celebrex and the pain is manageable.  I am not as comfortable but I can handle it.  I am being overly sensitive?  Right now I feel like I deserve those pain pills damn it and why should I manage anything?  The only reason I decided to try it is that once I am off these I can drive a car again and have a glass of wine.  When did you all stop using pain meds, did your Dr give you the same concerns?

OK- my next topic for all of you ladies is, self image.  How does everyone feel about what they see in the mirror?  I have to admit it isn't as bad as I thought it would be.  I was kind of nervous for the aftermath.  I looked at lots of pictures before I had this done and I think I prepared myself for anything.  Don't get me wrong, I don't spend much time looking at myself but when I do I think- ohwell, it will get better and it was worth it.  I was very large chested before and am kind of enjoying ht flat look in t shirts as well, funny huh?  I think it's funny that this is the one thing no one has brought up here yet, so I thought I would.  Chime in if you want to- or not, it's all good

Also, has anyone started thinking about nipples?

Hope everyone had a good day- I personally am already sick of sitting and doing nothing!

almagetty

Speech: Please let us know what your onc says about the Tamoxifen. Most seem to  place their uni patients on it, but there are some that recommend against it and go with close monitoring instead, via alternating mammograms and MRI's every six months. My onc wants to do both the tamoxifen and the monitoring. There really are no studies out there on prescribing Tamoxifen for patients that have undergone a unilateral mx, except to say that it is exclusively to prevent a new occurrence in the contralateral (the other) breast. And, there are a lot of ways of looking at the statistics on the odds of getting something in the other breast.

Laurie: I can't even imagine why your dr. wants to discuss Tamoxifen with you. This is one of my frustrations. There always seems to be "one more thing". When I was first diagnosed, the story was "you'll have a lumpectomy, then rads and you'll be done." I'd never heard of margins before and took them at their word. Then, when the re-excision margins weren't clear, it was "we'll do a unilateral mastectomy. You won't need rads and you'll be done." Lo and behold, the mastectomy is done and now it's "5 years of tamoxifen and you'll be done." To which I replied, "Tamoxifen?!?!" Their response was, "Well, if you'd had a bilateral, there would be no Tamoxifen. You'd be done." Well, darn it!!! No one told me that!!! So, Laurie, if they're wanting to talk Tamoxifen with you, I'd be interested to know why, if you care to share.

I think I was off of the narcotics by one week post surgery, but remember you had twice as much surgery as I did. I think your PS' office is being overly cautious. And tell your SIL to stuff it. (Just kidding. Kind of.) 

On to body image ... except for the times when I catch an unexpected glance of myself in the mirror when I'm undressing, I'm okay with how I look. Those times when I'm caught unaware, I do get startled just because it's not what I've grown to expect to see over the years. I, too, saw a lot of pictures online before my mastectomy and I think it did prepare me for what to expect. My skin is smoother than I thought it would be.  A lot of those pictures looked really bumpy to me. I was telling my daughter today that watching this process of getting "filled" is a lot like going through puberty again, but really fast. My right side is practically even size-wise with my natural breast now. The real one needs quite a lift from my bra to get to where the TE sits, but in clothes I look completely normal, albeit perkier than before. On the other hand, I have not let my husband see. I just don't want him to have this picture in his mind. Once the reconstruction is done, of course he will see the finished product.

I will be getting a nipple done by the PS. I never have considered not doing one. For me, it is a really big part of getting back to "normal". 

Oh! It's 6 o'clock. Time to start dinner ... or maybe it can be a pizza night. 

Getty.

1WonderWoman

getty: definitely pizza tonight!  speaking of which, how are you all doing with your appetites?  I am so not hungry and all I seem to like are Boost high protein (b/c I have to!), gummi worms (sad but true), tostitos with salsa and that is about it!   Even more sad, when I force myself to eat a normal meal, I eat like a child, slapping my chops together in an effort to masticate it enough to swallow it!   This is all very different for me!

Laurie: again you cause me to LOL with the junkie comments!!!!!  How do you think I felt trying to explain those other 40 pills were bad!!!!!!   You know I have been red flagged!  Thank god I have had the same GP for 30 years and he can vouch that I have never been on pain pills!  As for self-image, it does not bother me at all.  The old ones were knee warmers b/c they were large and I looked at so many photos, I knew what to expect.  The one thing I am totally happy about is not having to wear bras EVER AGAIN!  This makes me very happy.   Also, to those that don't want nipple recon b/c of the "always on" look, there are nude pasties that are made of a gel that actually do stay on so you can definitely do nipple recon and in summer shirts use the pasties to hide the nipples and you will be all set.   I was so concerned that I had cancer that my PS could have put a skull-n-crossbones where my boobs used to be and I would have been fine with that!  I just wanted cancer gone and I can worry about cosmetics later.

2 questions: does anyone else here have to have chemo?  is anyone's TE's moving?! 

BTW, and to to weigh-in on the tamoxifen issue, I thought if you went bmx and had no BRCA, tamoxifen was off the menu?  I do agree that with each step we think means "done" there is yet another step to go.

I am going to go have dinner....gummi worms and water!!!!!!!!!!!!  LUSCIOUS!!!!!!!!!!

Laurie08

Getty- I hope you got pizza.  The meal calendar my friends did has been a God send.  Tonight a friend brought over chicken salad sandwiches with pasta salad and toasted pita chips- it was perfect for a hot summer night.  Liz your food comments are funny!  I have been eating normally, just much smaller portions because I seem to get full fast.  But with small kids it is all about routine.  My son and I eat our cereal together every morning, I think he might have a fit if I didn't eat mine!  But I must admit I have been eating more sweets.  Usually I don't allow myself any, but I've been sneaking a cookie after dinner.  Gummy worms- no thank you!

I talked to my PS about nipples, he says everyone does them differently.  He said I can get them at the time of exchange or any time after.  But he said I have to wear cones over the nipples that are about 1 1/2 inches long for 8 weeks after the surgery!!!!!  Holy crap, 8 weeks?  I said how do you wear clothes or go out in public?  He said, I only do them in the winter time and you have to wear bulky sweaters and to be honest he says I probably won't be too social during the 8 weeks.  I said to my hubby, maybe I won't get them then.  He says after all the crap I am putting myself through I want to skip the nipple?  Really?  I suppose he is right, what is 8 weeks to have nipples for life right?

Lizzy- your 2 questions- no I am not having nor have I had chemo and I have not noticed the TE's moving.  I did have 300 cc's at time of surgery though which seems to be alot?

Laurie08

PS- Getty thanks for backing me with my SIL. she is a great person who rubs me the wrong way at times.  I told hubby tonight she needs to back off a touch, because I am starting to take offense to things....he reminds me she is just trying to help.  BUT because my husband and is a good husband he agrees with me 100%- it never pays to disagree with me, he has learned this in the last 13 years.

No idea on the Tamoxifen thing, her wording was- we need to have a discussion about the whole Tamoxifen thing- I am sure you are going to tell me you don't want it, but it's still something we need to talk about.  I go this Thursday.  I have a friend who goes to a holistic doctor to help prevent BC.  She is 41, her mom died from bc and her little sister died from it too.  She got tested for the gene and was negative.  I am thinking of seeing what that is all about.  Vitamin D (I have been told )reduces your risk, as well as fish oil and other vitamins.  Maybe check that out too Getty as a possible alternative to the drugs?  Just a thought...

jsmiley60

LAURIE: Okay you aren't a junkie!! I would have been upset with the ps office too if I were you, but they are probably just making sure you aren't addicted. And yes tell your SIL to butt out. You can't lay in bed forever - how will your muscles learn how to move again?!! That's just silly!

LIZZY: Yes my TE's move sometimes. Trying to scoop ice cream not only hurt but I swear it made my TE on the right side move - ugh! I don't like how that feels at all. I wish I could fast forward til after my implant surgery..........sigh!

As far as nipple recon, my pssaid he could do it in his office and I would only miss that day of work. He didn't sayanything about wearing cones.....I hope I don't have to do that!

I think I did too much today again, but people aren't visiting anymore and I hate sitting here by myself all the time! I went to the grocery and couldn't push the cart. I mean I could but it hurt in my chest, so I just picked up a few things. Grrrrrrrr! I'm going to have to have someone take me and help. I rode the motorized carts a few times when I was on chemo and suffering fatigue and neuropathy. Don't want to do that again.

I am accepting of what I see in the mirror and I wasn't devastated the first time I looked at my incisions, but I don't like it. This evening I have felt very depressed and cried a few times; I am grieving the loss of my breasts. I know I will get new ones with the implants, but they won't be MINE. I'm feeling very lonely too. I guess I'm trying to find the balance between feeling sorry for myself and grieving. I don't want to get myself stuck in a poor me place. I just want my boobs back! I want to go back to a year ago and never have breast cancer!! (wah!) I'm overweight so right now I am flat with a big belly and butt and I look silly. I have been putting the falsies in when I go out now that I'm not wearing the Ace bandages any more, so that helps. My self esteem is pretty low. My hair came back in all gray so I colored it and now it is getting gray again so I need to color it again. It is about an inch or inch and a half long and I've been spiking it. Won't be able to do that much longer so then not sure how I wear it. Don't really want it this short.

I guess I just want my life back. Sounds like I'm having a pity party for myself, so I guess I better sign off for now. Things could be worse.......

1WonderWoman

Laurie: you should get your nipples done in December as you will be the life of the all the parties with your perky CONE breasts!!!!!!   Sorry but you will be a big hit!!!!! 

My te's seem to be moving toward my underarms!  My PS told me not to worry as we do fills that will work it's way out but it is weird!

On the appetite thing, I am just not hungry, get full fast and have become even more picky than I was before.  I had to force myself to eat scrambled eggs this morning...gross!!!!!! I do like Chocolate Cherrios, however!

Oh girls...this is quite a journey we are on!
Liz

1WonderWoman

Jsmiley:  it is probably the meds but mine feel like they are going under my arms and I am only pretty sure that is impossible so I will take another pill and drift off to sleep where I will undoubtedly dream my foobs are on my back!!!!!

Liz

joystars

Reneemac, sorry to hear you are having trouble to get some decent sleep. Often times I do have problems myself, between a growing belly and a healing left flat chest...ain't easy.

What I found really helpful is to be surrounded by a fortress of pillows, so in my bed basically is me 5 huge pillows and one more for my DH The poor thing has no word on this haha because he understands I need to be as comfortable as possible to get some zzz. even tho some days, like today, that doesn't really happen.

Good luck on the tamoxifen! Hopefully not bad side effects to report!

almagetty, I so understand your concerns about the tamoxifen. I'm a unilateral girl too, with some family history on my dad side. My oncologist haven't suggest anything yet, but in my case this is gonna be a looooong road before saying "I'm done". I know I might get there at some point, for now is just taking it one step at a time: pregnancy now, baby's birth, chemo treatment AND .... god knows what else. *sigh* I so understand your frustration and just like you, I wonder when all this is really gonna be over.

Good luck on your research about tamoxifen, I have heard bad stories too but... doctors might know better. Pizza night rules, so hope you saved a slice or two for me! Hope you have a nice weekend!

speech, hopefully that drain will come out soon! Sending super healing vibes your way!

Laurie, HAHA was laughing lots about your junkie comments too! My only painkiller post surgery was Paracet, go figure! Some days right after surgery I was in pain but falling asleep helped to forget it.

About the body image... hmm good question I actually was thinking about posting about that for a while. Well, I won't have a reconstruction until next year, meaning I need to be friends with the prosthesis. The stripes from surgery are starting to fall slowly by parts and even tho in the beginning I refused to see the scar, now I'm able to look at it and to be "okay" with what I see on the mirror. There's good days and bad days, on the bad ones I cry like a baby just by the fact I lost a part of my body and I got a flat thin scar instead. On the sunny days, I'm thankful for the whole process I went thru, as I'm still here and baby keeps growing.
When going out, the prosthesis helps me to have a normal life, sometimes I wonder if it shows or not. Summer is here and I can't really wear the type of clothes I would like too (those beautiful summer dresses, tees with lovely cleavages) but all in all I'm happy with what I see in the mirror. I see a belly growing and growing and that makes me smile

lizzymack, girl! I love your sense of humor!!! your posts makes me laugh tons and see things on a different way... a more positive one! thanks A LOT for that!
Good luck on your gummie worms and water diet!!! *update: My hubby read my post and he is really worried about you, he believes you should vary your diet... what about gummie bears and crocodiles?! LOL

Jsmiley, I'm sorry to read it's still a bit tough for you. Simple things like grocery shopping are now like a big challenge, tell me about it.
And sometimes, just like you I feel sad about my boob. But then I just think about the worst case scene it could have happened if I kept it and I'm happy that boob is out!
Sending very happy vibes for you! Ain't easy but you are doing amazing!

almagetty

My husband and I had a really good laugh last night about the Madonna-type boob cone that I might need to wear with the nipple reconstruction. Luckily, Halloween will fall right around my recuperation from the nipple surgery. Instant costume!

I think I misspoke yesterday about the lack of studies for Tamoxifen use for unilateral MX patients. I left out one important detail. There is a lack of studies out there for Tamoxifen use among DCIS patients who have undergone a unilateral mastectomy. I have not looked into studies for invasive cancer. I just wanted to be clear.

We did end up getting pizza last night. It was delicious! Joy, I did save you a few slices. They're waiting for you in my refrigerator. I would offer a slice to Liz, but I'm not sure it fits in with her preferred diet these days.

Laurie:  I am taking Vitamin D  (2,000 IU) and Omega-3 daily in addition to my regular mulit-vitamin. I'm also taking calcium (Viactiv). This is all at the strong recommendation of the dietician that my oncologist had me meet with before my first lumpectomy. The studies the dietician showed me on the cancer fighting aspects of Vitamin D are super interesting.

If you consult with the holistic doctor, please share any advice, if you don't mind. 

Another simple thing that shows great promise in fighting cancer is the daily consumption of green tea. I first learned of this in the book "Anti Cancer" (which is fantastic, by the way). I've since found out that there are some really major studies going on right now at some of the huge research hospitals to see how effective the green tea is in fighting breast cancer. I don't love tea, but I have been drinking two cups a day. It can't hurt, right? Apparently, fresh brewed Japanese green tea has more of the ECGC in it, which is the property that makes it such a good cancer fighter. I bought some really high quality loose Japanese green tea yesterday. It was expensive, but if it helps in this fight I consider it money well spent.

We're also buying organic dairy and meat products (and fruits and vegetables, too). My grocery bill is higher, but if it makes a difference in our health ... 

Joy: For sure the doctors know better. I'm getting the opinion of a few of them, though, because I'm scared that just one doctor might be overly aggressive. My feeling is that if I'm going to be putting the rest of my body at risk for new complications in order to lower my risk of getting BC in the other breast, I want to make absolutely sure that the risk to the rest of my body makes sense.  But, I will definitely not skip Tamoxifen if all the doctors recommend for it.

Jeanne: Hang in there! You're about 10 days behind me in recuperation time. These last couple of weeks I think I've made giant strides towards feeling better. You will, too.

Liz: It has been true for me that the more they fill, the less it feels that my boob is under my arm. I don't know why this is true, but it is.

It's Friday! Happy weekend!!

Getty. 

jblcsw10

I love you women! I just caught up and love the wonderful postive focus of this group. Laurie, ouch, I am hurting from laughing about your cone boobs.

I had my 1st FU w/BS & PS yesterday - whew, big day out, 10 days post surgery. Wonderful news - no CA in lt breast, and 2 small grade 1 invasive CA tumors in rt breast but sentinal nodes clean. BS does not think I'll need chemo, but my next step is to meet w/oncologist to discuss. Unfortunately my black skin on the rt breast is due to inadequate blood flow to the skin, my BS hesitated to call it necrosis (he had some fancy term for it) but that is basically what it is. However both he and PS feel confident that with patience and work it will be okay. I have a regimen of cleaning/bandaging, etc. that I do twice a day. It is totally gross, talk about body image. It is almost impossible to do by myself so my DH helps me - a real test of true love, let me tell you. I have a newfound admiration and respect for all of you single women out there who are going through this - I cannot even imagine doing this without someone to help. I am very independent but this has brought me to my knees...Regardless, as awful as the skin issue is, it is just "superficial" - the real news is that I am cancer free and I am celebrating that. Now my job is to help my body heal so I'll clean & bandage & do whatever else is needed to help my body.

Body Image - I was thinking about this this morning b4 I read the posts. I never thought that much about my breasts - "too big, too lopsided..." Now I am going to love my body and every inch of it, just as it is. It is still hard to look in the mirror but it gets easier each day.

Lizzymack: I got 300 CCs at surgery and have felt like I had more 'foob" under my arms than on my chest from the beginning...yesterday both PS & BS said it is fine...normal. Apparently that changes with the permanent implants. After reading your posts I am prepared for the dream tonight about the foobs growing out of my back....My reconstruction is on hold now until the skin heals, probaby at least a month or more before any fills.

On sleeping - I have struggled with this, I have a set-up in my bed with a wedge type pillow & a bunch of other pillows. I stay there 1/2 the night and move into the recliner the other half. My back is always sore in the morning but it is do-able.

Getty: thanks for the info on supplements - today I am off to research what vitamins help skin heal...I have been taking lots of C but I am going to add D. I read about the green tea and keep meaning to drink that.....but I am still hooked on my coffee.

Thank you all for just being who you are and for your open sharing of this experience. It really helps! Jane

jblcsw10

PS Forgot to mention even better news - NO DRAINS. Hooray! I'm free!

RobinLM

Jeanne

I'd so love to give you a big hug, you are fighting hard - you are doing great. Hang in there. x

Laurie, 

The prospect of nipple cones is hilarious - you could stick tassels on for christmas!...... presumably they prop up the new nipple and make it stick out? Maybe like those things for inverted nipples ?? Let us know what they say.....

Unfortunately for me I have no problem tucking away anything I set eyes on!! I am striving to be as fit as possible, but it's an uphill battle

Great news  jblcsw10..... yippee!

A very valid point Getty about organic meat - I'm sure eating meat pumped full of growth hormone would be detrimental..... I must make more effort to eat better.....I'm not a huge gummy bear fan Liz, but I'm scoffing an awful lot of sweet popcorn right now!! 

Robin

reneemac

Well, I used the air mattress last night and slept for 4 hours straight on it, until the smoke detector in the living room decided to beep continually (the battery is getting low and this is it's way of telling us - LOL.) I spent the rest of the night in my own bed on my left side, so I got a total of 10 hours sleep. My 8 year old daughter wants to sleep on the air mattress with me tonight so we'll see how that goes. It's in the living room with a perfect view of the television, so I am not sure that sleeping is what she wants to do.

Day 2 of Tamoxifen and none of the advertised side effects so far. I am keeping my fingers crossed!

Body image - well, when I first saw my flat breast in the mirror, I was reminded of a joke that was told to me when I was in 6th grade by a very mean classmate - "Renee, you are a pirate's dream. You have a sunken chest!" None of my family, expect for my DH thought it was funny. I thought that the right side was ugly until my DH told me that the ugly part had been taken away in surgery and that my breast was beautiful. I still tear up when I think about that comment. I remember one of the surgeons telling me that this would be a work in progress for 9 months to a year, so I shouldn't worry about what it looks like along the way. My biggest issue right now is keeping the camisole that I wear in the right spot. Because the left breast is bigger than the "under construction" right one, the cami slips over to the right and I have to adjust it numerous times throughout the day. On the positive side, it's nice to not wear a bra!

MistyJ

jblcsw10-I am a huge coffee drinker myself.  I refuse to give up the once vice I have, but I make a to go coffee mug of green tea with organic green tea bags every morning.  By the afternoon, when I am ready for a cold drink I just add lots of ice to it and drink it then.  Maybe that will help you fit it in? 

jsmiley60

RENEEMAC: I'm glad you got some sleep last night!

JB: Hooray for no drains!

Last night when I went to bed,my left breast must have been swollen cause it looked bigger than the other side by a lot - I looked deformed! It's okay today; I could not sleep last night - I was still awake at 3 a.m. Ugh! I just could not relax or stop my brain.......hope it is better tonight!

I think I have a crush on my ps! I have been dreaming of him a lot!

Laurie08

jb- Great news that you are cancer free!  Congrats, I am soooo happy for you!  A Tad jealous about no drains...but very happy non the less!  Fingers crossed my fluid dries up this weekend and they pull these things!

Jeanne- I am so sorry you were having a rough day yesterday.  It must be hard to be doing alot of this on your own.  My heart hurt when I read about how you felt in the grocery store.  I too have been kind of frustrated about feeling so dependent on others and I could relate to how frustrated and sad that must have made you feel.  During this heat wave I am stuck in the a/c alone while my husband and friends play in the pool out in the back yard.  Someone comes in every hour or so to "see how I' m doing!"   If it wasn't so hot I would just sit outside too, but since I can't shower to get rid of the sweat after, and it's bee 100 out with humidity I feel stuck alone indoors.   I feel like life is going on and here I sit.  I'm happy that your mood seems better today and that you're having happy dreams about your PS!  I hope your swelling stays down, I wonder what was up with that?

Robin- Any luck getting a date yet?  You must be getting fed up with waiting and feeling anxious about this whole thing.  But you must just want the whole thing over with.  I was thinking of you today.... oh and Shutter Island was pretty good.  Not as good as I hoped but I think movies seem to just get worse year by year.  I remember seeing Silence of the Lambs in the theater and jumping out of my seat!  They don't make movies like they used to.

Getty- Thanks for sharing what you are taking for vitamins.  I will be sure to let you know what my BS says on 7/15 about the Tamoxifen and what I may learn when I can get into see a holistic specialist.  Funny, no one has ever offered for me to see a nutritionist etc.  Perhaps I will ask next week when I see the BS. 

 Renee- Glad to hear you slept a little  better, I hope your sleepover goes well with your daughter and that you both "sleep".  Either way it sounds like some great snuggle time and good memories for both of you to make.  God, I love that stuff!

Now I am very happy that I have had all of you laughing about the cone nipples...how ever- I do not think you will be laughing if you have to wear the damn things!!!  Too bad Madonna isn't as popular as she once was....sigh...it might have actually been cool!  I am going to ask more questions when I see him Tuesday.  I think I have to mentally prepare myself for these things.  It sounds like a lot to deal with, not to mention how long they make them to start out so they look right once flattened.  Oh my head, who ever thought we would think so much about boobs!  

Today the kids went to my in laws, hubby went to play in a golf tournament and I got my hair cut (and washed!) and a mani/pedi.  Now the hubby is running late and the kids are having a sleep over at the grandparents because of it and are not coming home...I have the house all to myself.  It is too quiet in here.  I am  off to pillage the fridge for an easy and light dinner.  I hope everyone had a great day♥

MistyJ

jeanne,  I think it is common to be crushing on your PS !  I don't remember which thread it was, but I do remember reading some ladies talking about "being in love with their PS" and also being in PS withdrawal!  You are not alone!  Makes sense considering how much we see them.  And if your PS is a good lookin' guy ALL THE BETTER-tee hee!  My daughter went to my last appt. with me and watched him pull the drains out, afterward she told my Mom the PS was DEFINATELY not ugly!  In fact, some of the residents have been pretty darn handsome!  Hansome enough to make me feel awkward showing the original ta ta's to him!!!  Dream on if it means you are sleeping good!

speech529

 Greetings Lovely June Ladies--so much news to catch up on!

Jeanne--It is so hard to do this with help I can't imagine how difficult it is alone.  I am glad you shared your heart here because I know each lady cares and if we could we'd come and hug you.  I know what you mean about shopping--I cannot push the cart either and it's tiring to walk around the grocery store.  You've been through so much and I think you have to take time and grieve.  I think we all have had those moments.  Whatever you go through is your reality compared with your life prior to the diagnosis.  It's hard. Period.  So cry and then do the next thing you need to do to beat the tar out of this disease!  I hope you have a good night's rest and God blesses you in a special way!

MRDRN I hope you can get a good, healing rest.  That's another good medicine.  Good for you on the gardener...I hired a maid to come in 2x a month.  What a luxury.  I think I will keep her even after I go back to work. 

Reneemac amazing you are doing so much...that's a workout!  I hope your work/time off issues resolve to your benefit.  

Joystars your positive attitude amidst the loss is inspiring. 

Lizzy I have had a decreased appetite, also...my DH has to remind me to eat sometimes.  I don't know what it is.  Maybe lack of activity?  I am such a food hound--you and I share some favorite foods--I love GUMMY BEARS and chips/salsa.  My only craving during this recovery has been for spinach salad with Greek-style grilled chicken breast.  

Laurie  your pain med story was funny but I am glad you were able to get a refill. My dad is a retired general surgeon (back in the day he performed radical mx's) and he said that people in pain process the meds differently than if they have no pain.  He said risk of addiction is small if you are truly in pain and you stop when you are no longer in pain.  He told me there was no reason for me to be in pain--to take meds as I needed them.    Sounds like your spa day was great...I plan to do that when I get back from my trip.

jblcsw Congrats on your drains being out....I got my drain out today too and I feel so much better!  I hope you heal successfully...it's so hard because it is so out of the norm, because it is you and it is scary.  Take good care of yourself!

So on to Tamoxifen etc....I met with my oncologist today--I went in there thinking that he was going to go over path reports and then shake my hand and tell me goodbye...not so.  Turns out he recommended some chemical prevention.  We talked about Tamoxifen and Raloxifine.  The latter was developed out of Tamoxifen for treatment of osteoporosis.   Since I don't have a uterus or ovaries, I will be on Raloxifine (if I choose to take this assignment).  So I need to do some research here.  I thought I was done...guess not. I have never heard of Raloxifine. 

I hope you all have some special joy this weekend!

I am leaving on 7/11 to Philadelphia for the professional workshop that I applied to attend in February.  I am so excited to be going somewhere as a regular person and not a patient!!!   I will try to check in while I am in Philly...but for sure when I get back.

Lots of love and hugs to all of you! 

stlcardsfan

Hi all!

So much to catch up on.

Pain meds - every time I see BS she asks if I need more. I can also call the medical assistant for a refill. I am happy to report that I am down to only 4 hydrocodone's a day from the 8 that I was on. The pain level really does go down! Advil also seems to help.

Appetite - no problems for me, although I did have problems when I chemo. I just had no desire to eat, and had to force myself to eat. Found that Boost was a good alternative during those days. I am still careful what I eat due the major chemo heartburn that I had.

Hot flashes - was given Effexor, but haven't started to take it yet. Since I was already in chemo-pause and having them, wasn't sure how much worse they would get with the ooph. Oh boy did they get worse, about 7 to 8 a day! I just hate being on a daily med. I also asked about other preventative meds because of ooph and wasn't really told to much. Just to make sure to take in enough calcium and vit d for the osteoporosis part. Will be seeing my cardio guy in October and go over what I need to do on the heart side because of the loss of estrogen. HRT is definitely out for me. 

Self image - I was small to begin with, so I am fine going out without any extra padding. In fact, it is just to hot to wear more up there anyway. My underarms are still healing from when the drains got yanked, so the last thing I want to do is use deoderant and risk a infection. Ouch. So, having been staying inside a lot anyway.

A retired co-worker came over today to do some weeding and de-heading in my garden. She has been over several times the past few months and it is her way of helping me. She is awesome. My neighbors who own a home cleaning business asking me when I am up for another house cleaning. They did this for me when I was going thru chemo and it really helps. They send over 3 ladies who clean anything I want for 1 hour. With a long haired dog, there is always stuff that needs to be cleaned.

Hope everyone continues to heal! And gentle hugs all around!!! 

1WonderWoman

To Everyone: I got my HER status back today and I am negative and I think b/c I am ER+/PR+ that is a good thing?! I don't know what is going on!!!!!!!

Joystars: your spirit is beautiful! I love it and I am very happy your pregnancy is progressing just splendidly! You are doing just great and are so positive it is just wonderful...and your baby knows it, too!

Getty-they did say when the fills start they will move back to where they are supposed to be but my PS is on vaca next week so 10 more days with drains ...woe is me! For spite I am going to lift weights and chow up some gummi worms!!!!

JBL-speaking of body image, I am so with you. Mine were never right...one was bigger than the other...noticeably. One wanted to look ahead and the other must have been depressed b/c it liked to look down!!! I will also never forget, I was 13 years old, my father was a single parent, I was walking to school with some friends and I mentioned that my dad had to take me to the doctor that afternoon and one nasty witch said "what? To get your boobs fixed?!" Cruel kids especially b/c my dad was raising me! It was not something a 13 yr old girl wanted to talk about with her father! So I am with you...no more bras and matching foobs....I am ok with this!!!! Congrats on your drain removal! I am so tired of these!

Robin-my healthy friend (soon to be ex!!) tried to get me interested in fruit snacks today? WHA? I said gummi worms dammit! That would be the equivalent of your friends trying to get you off of sweet popcorn onto rice cakes!!! Um..no! BTW, about the Xmas tassles, my friends are having a lot of fun with comments like "which will guide the sleigh!" Perhaps I will put Christmas bulbs in there!

Reneemac-I am so glad you had some sleep on the air mattress and then that darn thing designed to avoid a human barbecue woke you up alarming you about how it needed some more energy if it was to do it‘s job!!! That is a terrible story! This was something else about the air mattress, which perhaps you figured out, which I meant to tell you which is don't fill it all the way up. My friend told me that helped. Also, sadly, we both have mean kid stories about our previous, wretched, cancer filled boobs! POOR, POOR US!!!!!!

Jsmiley - unless we were all completely anesthetized, it is hard not to notice the aesthetic value of these PS's!

Laurie-I hope WE BOTH lose these damn drains soon! BTW, if you want to have a light dinner...don't forget....gummi worms and water! You will feel completely refreshed!

Speech - don't forget although you may have to take Raloxifine our docs are just trying as cautious as possible. Sadly a lot of us are young on these boards. Even the VNA said she is used to dealing with cancer patients in their 70's and 80's where tamoxifen is used just to stop it from growing because they are too old to be operated on. I think b/c of all of our ages ours docs are being very cautious.

St Cards- that was really nice that your retired co-worker came over to de-weed for you. My landscaper came to mow my brown lawn that did not need mowing and he mowed in the afternoon and it has been 100 degrees almost every day in CT for the past 6 days and NO rain....I see fired in his future! Sorry about the hot flashes....with the weather here these days I can't imagine but seeing as chemo is next for me I will be in early menopause so I will certainly be discussing hot flashes soon!

Special healing hugs to all and keep on smiling girls!

MRDRN

Laurie08    GOOD QUESTIONS!!    !I have been feeling a bit guilty about the pain meds but the surgery I had was extensive and it was on top of another surgery, and I had been on some pain meds before for arthritis in my knees, so I know that I deserve to be on them.  BUT the more you control someone's pain, the more post op exercise (within reason as ordered) they can do!  I am not kidding that on like day 6 or so, after I got home, I was up for 24 straight hours!  The more I moved around, I didn't have pain as I was diverting my attention, and then called to see if I could supplement with Advil before the usual time after surgery per their protocol.  The addition of advil potentiated the percocet.  I DO NOT PLAN on getting addicted ! If you have pain, which is a SUBJECTIVE EXPERIENCE, you have pain.   I switched to vicodin one week ago and then this week, when I ran out yesterday, I went 24hrs without and even took Advil pm to sleep but only got 3 hrs of sleep!  So in the morning (yesterday) I too called and asked for another week, and they reminded me on the phone that it is a narcotic which I said I am well aware of and they ordered it without any problem.  For me, I am so grateful that the PA said that it is normal to have the pain I am having and it does make sense to DO LESS if you are hurting!  I am getting bored of this and am a person who likes to move.  

Self Image?  I am amazed at how good I feel now that my belly roll is gone!!!!  More later on that ...I am very happy to wake up with soft "girls" and it turned out to be so much less friengthening than I thought the 11surgery was going to be!  I am grateful to my medical team, and feel like I just had cosmetic surgery, forgetting sometimes that it was for a BC!

speech529  That is great that you got a cleaning person to help! Something has got to give and just think (tell your significant other or whoever)  that the money you save on "Shopping" while not being able to drive is a benefit that will off set the differrence!

 stlcardsfan Hot flashes make my pain worse!  The effexor I started a week ago I hope is going to help.  I really don't advocate a TAH three months before a BiMX with DIEP.   

 

orchidgal

Hi June Ladies, So interesting and at times humorous to read your posts. Thanks for the laughs! And am glad to hear you are all making your way through the healing parts, slowly yet surely. Wanted to say re TEs, I asked which ones my PS will be using and he said Siltex low heigth 7100s. I couldn't find them online, so I asked his assistant. She said they were brand new ones that have "tabs" to suture them down so they don't migrate!

Re the green tea, you can buy a bottle of green tea extract with "concentrated polyphenols," and just squirt it into your mouth or in a glass of water or a cup of herbal tea. It is decaffienated, too! An excellent hi-dose anti-inflammatory bromelain supplement is by Karuna, called Bromezyme 2400, it is super potency. I'm taking about 6-9 a day. Also, Thorne buffered C, you can take as much as you can up to bowel tolerance. Thorne Medi-Clear is an anti-infammatory Super MultiVitamin MIneral Amino Acid & More powder you can buy online. Pronogynol is a proanthocyandins supplement made from grapefruit seed extract, standardized, for reduced infections and increased immunity. Oncoplex ES is a concenttrated broccoli seed extract. Curcumin is also a potent anti-cancer plant you can buy in capsules. BRM 4 has triple effect NK (killer cell) activity. Also, R-Lipoic or L-Lipoic Acid, & tocotrienols. Uzzi Reiss has a wonderful book called The Natural Superwoman that outlines this stuff and more. Just a few things to consider when putting together a natural yet potent program to prevent BC from coming back. And yes, organic everything and healthy oils, raw, organic, unfiltered olive is best, - no canola, safflower, soy oils, please. Now to sleep! Take care everyone!