January Mastectomy

Kat,

Hi, Nice to meet you all!  Donna, Sally, Brenda, everyone!  I am Paula!  Glad you finally get to take a shower!!!  yay!  does that mean that you did not get your fill today?  I am recovering well, getting back to a place where I can do more, still don't have the same range of motion that I had made it to but baby steps!  Lucky that I have a great husband and family.  My poor son (5) is running a fever tonight so I am home with him while the rest of the family is out for dinner celebrating my SIL b-day.  I don't mind missing the SIL (not my favorite person) but now I actually have to fend for myself for dinner!  Augghh!  Here's a first in a while!  Guess we'll be having something pretty simple tonight!  Maybe I'll just have margaritas!  haha! JK!  Haven't been able to get those off my mind since we set our clubhouse date!  Anyway, I'm all about the January Recovery Group!  Love and blessings to all of my sisters!

Bless & Release!

Paula

My real name is Debbie and you are certainly welcome to call me by that name, as I may be the only Debbie in the January 'recovery' group.

I have been around for so long, and there are sooooooo many Debbies sprinkled around BCO, that the other threads that I frequent have adopted me as Faith or faithie (combination of Debbie and Faith) to help keep me straight from the many other Debbies.

If it turns out I'm the only Debbie here --we can go with that concept, LOL.

My posture is a constant reminder. I must continually prompt myself to "work" at standing tall. I feel myself caving in further and further by the hour, but am working hard to combat the tendancy of gravity.

I am now taking two to three 20 minute walks thru the neighborhood per day. Today I traveled further in the same amount of time, so I must be picking up the pace a bit. LOL.

My husband is being nominated for spouse of the century. He massages my neck and back and helps me with my shoulders.

Can't wait till our entire crew is drain-free. There will be a round of cyber margaritas for everyone on that occasion. I hope that everyone has some great plans on the horizon for the weekend. We have some fun social events -- which will be my first to integrate with 'people'.

xx00xx00xx00xx

Strength and courage.

Strength and courage.

Strength and courage.

Morning Ladies {hugs}

Thursday I saw my PS and had my drains removed. As annoying and uncomfortable as they were I was afraid it would hurt when they came out. But I didn't feel it at all. Had my first fill of the expanders. 190cc on the left and 120cc on the right. It didn't hurt, it was more of a cold, heavy, tight sensation. Some of the fluid on the left backed out and that side is now a little uncomfortable. Nothing that ibuprofen can't handle   Without the drains I had the most refreshing and best shower of my life. I am now well on my way to the final reconstruction and I can not wait.

Friday I met the oncologist. I was so emotionally drained, exhausted really, that I came home and went straight to bed. Just fell asleep straight away. I was told ER+, PR+, Her2-. This is very good news and I was relieved. One of the reasons I made the decision for mastectomy was because I did not want radiation. I also did not want chemo and the oncologist didn't recommend it (YAY!) We did discuss Tamoxifen and Herceptin but I opted not to because taking this only marginally changed the survivability odds. I am so blessed and know how lucky I am. I feel a little guilty that I am getting off so easy when so many of you are having a harder time. My heart and love goes out to all of the January ladies. I think our group rocks   I added in the first names to the original list for easy reference if that helps:

Jan 4 - angicpa () - total right mastectomy

Jan 5 - SherryAF (Sherry) - bilateral mastectomy, immediate Free Tram

Jan 5 - cleo100 () - bilateral mastectomy, TE

Jan 6 - robinlbe (Robin) - bilateral mastectomy

Jan 7 - Lynh (Lyn) - bilateral mastectomy, immediate TE

Jan 7 - CinD (Cindy) - left mastectomy,node removal immediate TE

Jan 7 - Leah58 (Leah) - bilateral mastectomy

Jan 8 - Sunsnow (Maura) - bilateral mastectomy,SNB,expanders

Jan 8 - pbebow (Paula) - bilateral mastectomy,SNB, expanders

Jan 11 - frosty1 (Brenda) - bilateral mastectomy, delayed DIEP

Jan 12 - formykids (Cathy) - bilateral mastectomy, SNB,delayed DIEP (I think)

Jan 12 - cat60 (Cathy) - right mastectomy, immediate TE

Jan 12 - iamgiggles1 (Kelly) - bilateral mastectomy, delayed recontstruction

Jan 12 - judgejaclyn (Jaclyn) - bilateral mastectomy,SNB,immediate TE

Jan 12 - jakhope () - partial mastectomy, SNB

Jan 12 - Daler () - right mastectomy, immediate reconstruction

Jan 13 - Lynbob (Lyn) - bilateral mastectomy, SNB,immediate TE

Jan 13 - mom2mms (Maria) - left mastectomy, SNB, immediate TE

Jan 14 - Jill1965 (Jill) - left mastectomy, SNB, immediate TE

Jan 14 - MelissaD (Melissa) - bilateral mastectomy,nipple sparing,SNB, immediate TE

Jan 15 - faithandfifty (Debbie) - bilateral mastectomy

Jan 18 - taraleec () - bilateral mastectomy,delay surgery,TRAM reconstruction

Jan 19 - Shelly328 (Shelly) - bilateral mastectomy, reconstruction

Jan 21 - TexasPeaches (Susan) - right mastectomy

Jan 21 - Susie123 (Susie) - bilateral mastectomy, immediate TE

Jan 22 - boromom (Melissa) - bilateral mastectomy, immediate TE

Jan 25 - Neversurrender (Sally) - bilateral mastectomy, immediate DIEP

Jan 25 - KatRNagain92 (Kat)- bilateral mastectomy, SNB, immediate TE

Jan 25 - ariesrottie (Donna) - mastectomy, immediate TE

Jan 26 - KELL414240 () - bilateral mastectomy,SNB,immediate TE

Jan 26 - aces () - bilateral mastectomy, immediate TE

Feb 24 - CindiS (Cindi) - mastectomy

Jan 27 - binga (Becky) - bilateral mastectomy,immediate TE

Jan 27 - grdnslve (Lola) - right mastectomy, delay reconstruction

Jan 28 - lexislove () - right TE removed,implant placed, left breast lift

Jan 28 - TNgolfer (Marianne) - bilateral masectomy, immediate TE

Kat,

From what I have read, you can fly.  Ask the doctor about a compression sleeve for that arm. 

I am now 8 days on the "other side" and feeling better each day.  One drain left, but it is down to 40cc over the past 24 hours and dwindling steadily so I am hoping it will come out Monday.  It is really bothering me (it is annoying).  This is still quite a roller coaster ride we are all on....get past one hurdle and on to the next.  PERSEVERANCE and PATIENCE -- a tough combo!  I love this group.  It is my morning "fix" and my oasis in the storm.  It is the place I find encouragement, good advice and feel the love. My husband has been surprisingly helpful.  He has taken care of ALL household chores.  I haven't done a thing since I came home.  But, he, too, is having a tough time.  My neighbor helped change bandages when I first got home.  He went to the PS appointment and also sneaked a peak.  I think it is just a different process for the husbands. 

I too have 500 cc capacity TE's.  PS said he would fill the left with over 100 on Thursday...that is the one that had to be deflated during the 2nd surgery (which was a muscle tear).  That's making me a little scared, but I trust he knows what he is doing....been doing it for over 18 years!  He won't fill the right, in order to catch up.  Then he plans on fills once a week for 6 weeks.  Said he will over-fill,so when he places the implants there will be room for them to move around.  Apprehensive about how all of this will feel.  Right now, just feel very tight and sore on the right and a lot of tightness, soreness, and numbness on the left.  

Lyn, Thanks for the list.  Thanks for the info on how the fills felt. Great news for you...I am hoping the OncoDx will be kind to me as (just like everyone else) I am not looking forward to the prospects of chemo....one step at a time.

Thanks for the list Lyn, makes it easier to figure everyone out

I was fortunate to have immediate recon, and I think my surgeons did a fantastic job.  My BS removed my areola and nipples and then all the tissue was removed through that hole.  Then my PS used those holes to put all my tummy tissue and fat in (and somehow attached all the blood vessels through those holes).  He then took a circle of tummy skin and covered the holes.  When I am all done with recon, he says my tattoos will cover the circle completely and I should have no  visible scars.  This totally amazes me. 

Brenda - what you said about phantom pains....I totally get that...I was cold the other day and the chill went straight through me and I swear, I felt like I had Nips......intellectually, I know it is impossible, but I still had to feel with my hand....very strange.

My recovery is going very well.  One drain left, but I feel very close to "normal".  I have a lot of restrictions on lifting and bending due to the diep, but am moving normally.  I was able to go off all my pain meds on day 8, not even needing Tylenol since.  My incisions appear to be healing well.  My doc did not use any dressings, so they have been open and visible the entire time.  I guess it makes you get used to them fast.  I find it odd, the differences in docs as to showering and such.  I have been allowed to shower with my drains and uncovered incisions.  No wound care required, bandages or etc.  Don't you wonder why they are all so different??

Donna, Kat, and Cathy....I will keep sending prayers that you hit the 30%, or under 11 score. 

 To all my sisters in the JMRG (January Mastectomy Recovery Group) stay strong !!

Robin, I added your name into the list in my other post. I wanted to give you a hug and tell you that you are not alone in the 'survivor's guilt'.  Some of these lovely ladies are having greater hurdles and I feel like I am getting off easy. And there is nothing easy about any of this. No 'easy' decision' to choose lumpectomy or mastectomy. Usually the people who say it is easy have not been faced with a life changing decision.

I am sorry that the reconstruction decision is hard. It just is. There is no 'easy' path here. I could not face waking up from recovery without something there. I think you are very brave to take the time to see how you feel. See how it looks and make your decision based on having lived it. You can always do reconstruction later on. I thought I wanted the TRAM until I watched PS's video on the different reconstruction procedures. That was too invasive for me but it may be right for someone else. I am sad that I miss 'the girls' who have been with me for most of my life. And my birthmark on the right (cancerous side) that was incised away with the rest of the tissue.  You are right, this is a loss. {hugs}

I am excited about the reconstruction. My doctor prefers gel over saline for implants and he is very good at what he does. Breasts are his specialty and he works closely with the local breast centers and caters to BC patients. He leaves room on his schedule for new BC patients and always moves their surgeries ahead of elective surgeries. There is a forum on here on Reconstruction you might find helpful.

robin & cathy--i know how you feel--that crater is killing me, hubby can't look & that is killing me-but it was a blessing in disguise for me to not have had the reconstruction since the whole game plan has changed.  now i can just heal, get the chemo & rad  then deal with reconstruction.

have to edit this, as regarding the little pads, i had to take out some of the stuffing as it looked too weird with the unsupported hanging basket next to it..and my camisole has velcroe to keep it in place once i get it positioned.  doesn't look good enough to wear just a shirt alone, but at least provides some balance with another shirt or vest over.  then i found some gel type boobies to use in my bra whenever that will be comfortable...hoping that will get me through being in public.

wierd how the guys are so obsessed with boobs--there is cleavage everywhere--yet they can say it is no big deal.  although i appreciate my hubby saying that, no amount of encouragement would help him if john henry had been whacked off--i mean that in the surgical sense.

by the way, i am lola.

brenda & cindy- not sure which thread i posted this on, but one of my patients at the clinic i worked at cut her hair before it fell out, then hot glued, sewed  & velcroed pieces about the rims of various hats...it was wonderful.  she  didn't want her clients aware of her situation.  anyway, it became her signature--those wonderful hats continued even when the hair came back.

lyn--thanks from me too, for continueing this thread, as i was afraid we would splinter during this journey due to our differing experiences.  hopefully this will help all of us maintain our perspective and emotional balance. 

have to say thanks to you for helping me this week as my little world was shattered.  i was not allowing this to be any big deal, and it was much bigger than they were expecting, so i was that much more flattened.

hugs to you all,

lola

Robin,

No one can make that decision for you.  My only advice is to find and meet with others who have had Mx and have made different choices about recon.  Hear their stories.  Ask them questions.  See their results.  That is what I did.  It helped me to make the decision.  I can't begin to tell you what men think (I don't think they really know).  I know my husband sincerely felt that he would rather have me alive without breasts, but we all know they would much rather have us alive and with breasts.  I wasn't sure how I would feel without them, so I didn't think he could really tell me ahead of time how he would feel either.

I know this.  When I woke up in my room after surgery and finally looked down, I was pleasantly surprised to find two little mounds covered with my own skin and 2 little bandages across the middle of what certainly looked like breasts.  I had a bilat Mx and a skin spaing Mx on the right (with just a small horizontal scar) and a skin and nipple sparing Mx on the lt with just a small semi-circular incision under the areola.  It was amazing to me as well that they were able to remove all that breast tissue and insert TE's in such a small space. 

Trust, Robin, that you will make the right decision for you.  Every survivor that I met did not regret her decision.  They were all comfortable with what they chose.  Research all your options.  I was not a candidate for a TRAM flap as the PS thought there was not enough extra tissue, and I personally didn't think I could handle the longer surgery, the TE's w/silicone implants was my decision.  Even though I am going through a lot of discomfort right now, that won't last.

Here's a little chuckle for y'all:  After my husband and my oldest son (34) left the hospital after the 2nd surgery, they went to get something to eat and then head home.  When they arrived at the hospital the next morning I asked them where they went.  Neither one wanted to answer, so I instinctively knew ... they went to Hooter's.  I didn't tell you all before, but the night before my Mx my husband and I actually went to Hooter's for dinner.  It might sound sick to some, but they actually do have the best wings in our little town.  It will all be okay.

Marianne

Second post in a row...I had to hit post or I was afraid I would erase it again.

One 'funny' thing from my surgery....my PS told me that if they found anything in the SNB, he would abort the diep and put in TEs so that I could get whatever treatment would be needed, then we could go back in later to do my diep recon.   In my mind, I knew that if all went well, surgery would be 14-16hrs.  If something was found in SNB, surgery would be 4hrs or so.  Anyhow, when I started to come to in recovery, I kept asking (mumbling really) to the nurse "what time is it" and she would just shush me and mumble whatever inane things they mumble to calm people.  I asked over and over and finally she said, "Honey, it's 9:45 at night".  I said "14 hours Awesome" and fell back to sleep.   I'm sure she thought I was a loon, and I don't know how my brain even focused enough to figure the time frame, but I drifted back off and woke knowing that it had beeen a success and that I had "my" breasts. 

It is strange to me.  I have the same skin I have had on my breasts my whole life.  Same birthmarks, freckles, etc.  They do not feel fake at all to me.  My nipples will be fake, but the breasts seem real.......just fixed.....don't know if that makes sense or not.

A sense of humor helps ... add me to the list of no recon.  I prefer to refer to myself as Amazonian -- since they cut off one breast.  Or, as my daughter and I sometimes refer to me, the Uniboober.  I totally agree with feeling naked.  Sometimes I just want to tell people for the shock value and other times I know people are staring -- mostly from people I know.  THey are curious and not sure how to ask.  It is sometimes fun to torture them a bit.  I almost dread the warmer weather -- much harder to hide when you don't do layers or big jackets.  And please don't feel survivor guilt -- you lost something that won't come back.  The only opportunity you won't have is to lose your hair!

Wow Ladies!  I just got caught up and I kept thinking, "Okay, I'm going to reply to this or that" but now I can't remember who or what I wanted to reply to.  So, I'm just going to reply...

first of all, I love the hooters thing!  I think I need to go to Hooters!!!  I am still doing well, had a little mishap on the ice today on the way to my son's baby shower... I slipped and fell on my bum!  It hurt, I'm not gonna lie, but I think I'm okay.  I also started my period and have been having some killer cramps so not sure if my lower back hurts from the fall or the cramps, but it's okay.  My younger son (5) has been a little sick and got worse today, had to take him to the walk in clinic.  His asthma really kicked in and he had a fever of 104.3.  He's better now, with lots of breathing treatments and lots of drugs (we feel like drug factory around here).  Nothing like a child being sick to take your mind off yourself!

Talking about husbands and scars and numb areas...  My husband and I both looked very closely at my incisions before we even left the hospital and he has been my only care giver helping with my showers and dressings and putting lotions on for me since the beginning.  I've had him touch certain spots that I thought felt funny (kind of squishy).  I even told him yesterday that I think it's cute how he pretends that the sight of me without a shirt on turns him on and he acted all offended and said that it does.  Anyway, the other day after my shower he had me put my robe on backwards and we sat on the couch and he gave me a backrub.  so, we're sitting there and for some reason I looked down and realized that my robe had fallen down and I was sitting there with my chest completely exposed and I didn't even realize it because they are numb still.  We laughed so hard, I told him he'd have to keep an eye on me or I'd be flashing the world and not even notice it!  Or someone could be feeling me up and I wouldn't even feel it!  I guess if I really put too much thought into it, it could be sad, but I prefer to laugh about and be thankful that I'm alive.  but I know that that is not always easy to do, but humor helps me get through a lot of things in life, so I have to laugh through this too.  

My hope is that we can all find something to laugh about every day, and that we can all find whatever it is that is going to help us get through this and find peace with our decisions and what we have to go through.  I also know a little bit about the suvivors guilt, but I also know that anyone that has to go through more wouldn't wish it on us or anyone else.  We all have to do what we have to do.  I know that there were people in my life that thought I had lost my mind when I chose to have a BMX instead of a lump with rads, but that is what I needed to do for my peace of mind and I have absolutely no regrets!  I know that for me, there was never a question about the reconstruction, right from the beginning I knew that I would have some kind of reconstruction, only because I know that I am too vain not to.  After more research I decided on the TE's with implants.  I know that I am going through more pain now but for me, it is worth it for what I'll get out of it in the end.  And I love what someone (can't find the post now to remember who) said about their fake fingernails and fake boobs!  I love that!   Of couse these are my boobs!  I paid for them with blood, pain and yes some co-pays so they will absolutely be mine!  Thank you for sharing that with us!

Bless & Release!

Paula

Paula - I find myself sitting sometimes and kind of massaging my breasts.  I don't even realize I am doing it (I think comforting myself that they are still there).  Anyway, I told my husband, he will have to keep an eye on me or I will end up getting kicked out of our girls' basketball games for improper conduct.

My husband sent out emails to a group of my closest friends and our families all through my 14 hours of surgery and my recovery in the hospital.  Today he was going to send his final installment, with my path results and such.  He was asking me if I had anything I wanted to add.  My 13 year old daughter said "tell them she is normal again, she just needs to nap a little...then after a pause...Oh yeah, and she has a drain coming out of her belly"  How soon these things become common place.    When I first came home with my 3 drains, my kids wanted quick peeks, but would flee the room when we emptied and stripped them.  Now they sit and carry on conversations and even hold the bulb or cup while my mom and I are tending the drains. 

Super Bowl is always big for us as we are HUGE football fans.  Unfortunately our Steelers are not in it this year, but we will be watching and rooting for the Saints. 

Have a good night ladies.

Strength and Courage !

Never Surrender !

Sally

Thank you Binney {{hugs}} You are welcome to stick around and hang out with us.