so much to add

I am horrible blogger but let me catch you up.  I once again split open in my chest even with the expanders taken out.  I don't know if my skin doesn't do well with stitches or what.  Anyway on the May 9th when they took the remainder of my lymp nodes out under my left arm they stitched me back up again.  I am not going to lie the lymph nodes hurt pretty bad.  I couldn't move my arm and needless to say I didn't have the best nurse when I woke up in recovery.  I would ask for meds and she wouldn't even respond.  Once I asked for my husband and my mom then she though she would speak to me.  She was on the phone with her boyfriend and then her mom.  Anyway, the surgery took sometime to get over.  My arm is still numb in the back and I freak if anyone touches it.  Not the freak where you get mad the freak where someone just zapped you with electricity.    I finally went in for physically therapy after a couple weeks to get my arms moving.  Unfortunately I didn't see someone who was familiar with breast cancer and believe my left shoulder now has a tear in it after stretching to far.  I will go into that more later, like I said there is a lot to catch up on. LOL
I wish I had done this as I was going a long I feel like I am leaving something out or not putting the importance on some parts.  I was referred to an oncologist and one of the first things she said was when you come in for chemo....I had no idea. My breast surgeon thought that chemo and radiation wouldn't be needed as the remainder of my lymph nodes came back negative(Thank God) My cells were reproducing faster then they were when they did the original needle biopsy but my breast surgeon thought it still wasn't necessary as my case was brought in front of a conference and 25 doctors had all thought that I wouldn't need it.  I took the oncotype DX test.  (they take your tumor and 23 of your genes, your age and determine what your reaccurance score is) I had an 9 percent chance of reoccurance according to this test.  The breast surgeon referred me to another oncologist per my request.  My new doc also spoke of chemo.  I couldn't understand and by then had enough and just said "do it" the told me to think on it and I said I had enough of worrying and back and fourth and just to do it.  I asked her about the oncotype DX test and she said it was for post menopausal women.  They didn't have enough studies on women my age.....same story.   I was scheduled to have a port put in on Wednesday.  I called my breast surgeon on Tuesday and told her the news.  She again waseemed shocked but I am sure didn't want to step on anyones toes.  I did ask her why I took this test if it didn't pertain to me.  She said that it did, that there was just fewer premenopausal women in the study for obvious reasons because there was fewer of us.  We talked for awhile and I decided I wasn't going to do chemo.  When I went back to my oncologist she did say it was a lot of toxins and would be satisfied if I had a full hysterectomy with my ovaries out and the hormone blocker pill for 5 years.  Fair enough.

   I had my full hysterectomy with ovaries out on Aug. 24th. with the da vinci robot.  Let me tell you that was the easiest surgery and I was thankful as my body had been through enough.  The HOT flashes did start in probably 10 hours after my surgery.  I was amazed at how fast they came on.  They aren't joking when they say you are slammed into menopause over night.  I kept telling myself it was easier then chemo.  I was driving 3-4 days later.

  I was scheduled to have my expanders put back in on the 17th of Sept. they were going to use alloderm to help my skin and help the expanders stay in.   I was so excited to get on with the process of having my boobies back.  I hated wearing the fake ones.  Summer they were hot and I didn't want to go to the pool or beach with my children.   I made the mistake of assuming it would be just like an implant surgery I would be in and out and no big deal.  Right before they wheel me in for surgery the doc says most women stay the night. ( I wasn't prepared for that. I had no one to watch my children) When I woke up I was surprised by the pain and had decided to stay the night, actually ended up staying two.  The doctor had said there was so much scar tissue they had to be real aggressive to get the expanders in empty.  When I got home I was in a lot of pain.  I could feel the expanders on my ribs and my sternum and it hurt so bad.  I kept telling myself it would get better it would pass.  I had learned usually day 3-4 I felt better.  This one wasn't going away.  It was horrible.  I went for a check up and the doc had told me because the expanders were empty they are flat so they are stretched out further plus I had drain tubes AGAIN.  I had them after my mastectomy, expander removal, lymp node removal and now again.  I hate them. I know they serve a purpose but I hate them!! I always seemed to feel better once they came out.  When I went for another follow up after having the drains in for 3 weeks they took them out and were able to give me my first fill.  I felt ok in the doc but by the time I got home I was miserable!! It was hard to breath and there was a pulling I can't explain.  I was only getting 50 cc's because of all the problems I was having they wanted to go slow.  I went the next week for 50 more and I felt sooooooo much better.  The expanders were begining to lift off my ribs and sternum and it was a huge relief.  My third fill was the same but I was starting to get red skin and a bubble like deal under my skin on my right side at my surgery scar.  I came back in the following week to have the doc look at it and he wanted me in surgery the next day.  So Nov 1st I had another surgery and you guessed it another drain tube.  My lymphatic fluid was building up and was sitting in that pocket and had ate through my own tissue.  It created a weak spot in my skin and I had to hold off on my fills until the drain was removed and I healed.  This I hated because I still didn't think I was big enough for no fake boobies.  I am not petite and 150 cc's looked like nothing on me.  I had the drain in for 3 weeks and was still draining more then I should but the doc didn't want me getting an infection from the tubes.  I once again started to fill up with fluid at the bottom of my expander and the doc drained 60cc's with a needle.  He thought if we started to fill again that maybe it would leave no room for the fluid to stay and would hopefully drain into my body and filter like it was suppose to.  I came back in the next week and they gave me double the fill 100 cc's.  It was tight and I could fill it more then the otheres. I had noticed something that looked like it was poking me from the inside and under my thin thin skin.  The doc said it was the expander that had a fold in it because its not full all the way or enough.  He said its like a balloon when its not full there is wrinkles in it. He did say my skin is very thin and wants to add more aloderm (cadaver skin) He would like to do it at the implant exchange but doesn't think we will make it that long and told me as soon as it comes through my skin to call him and we will go in.  So now I am just a ticking time bomb waiting to split open AGAIN.  He did tell me that if the expander does come through and he need to change it out he will fill me to where I am at now and won't make me start all over.

Phew I think I caught you up.  I am sure I left some out. This process has been longer then any of us thought and what ever seems to be able to go wrong has.  The good news is I seem to be cancer free.  WOHOO!!  The rebuilding is just taking so long.

Breast tissue expanders problems

I am 39 years old and have a 2 and 4 year old.  I was diagnosed on March 12th with breast cancer.  I have since had a double mastectomy on April 10th with immediate reconstruction done at the same time.  I had went to my OB a couple weeks before for my regular pap and mentioned that I thought I felt a lump in my right breast.  I had felt it for years and so had my other OB's but was wrote off to fibery tissue.  This time the doc thought it was a good idea to do a diagnostic mammo.  I went in for the Mammo and after the first round of pics she said the radioligist wanted more pics of my left breast so we did more.  Then they wanted and ultrasound.  A week later I was sent back for a needle biopsy on my left breast and a another lump in my armpit.  On the 12 th of March my doc called me in and told me I had cancer in my left breast and the one in my lymph node was clear.  I was in shock and not totally surprised because I could tell by the way her assistant was on the phone that something was wrong.  I was then sent to a breast specialist and we began going over my options.  I only had breast cancer in my left breast and thought that it was my best option for minimal reoccurance to have a bilateral mastectomy.  I had a centinneal lymph node dysection at the time of surgery.  When I woke after surgery it hurt more then I thought and was very surprised at how large my breast already were with the expanders. The expanders felt like thick rubber like the red kick balls you see on the play grounds.  They were stiff and hard and felt very abnormal.  I also had 4 drain tubes in place.  It felt a little sophicating but was tolerable.  By day three I had taken a turn for the better and thought I could conquer this thing.  We expected to have the double mastectomy with immediate reconstruction and then after a couple months of filling the expanders and a couple months of stabilzing them we would have one more sugery for the implants.  Well things havent gone quite so easy.  We went for a follow up appointment on the 17th with my breast surgeon and she said out of 3 lymph nodes that were taken out 1 had come back positive so I had have another surgery to do a full lymph node dysection which we were trying to avoid.  We had caught it early, the tumor was small, the cancer was invasive and even knowing it was there my doctor or myself still couldn't find a lump after the needle biopsy so it was pure luck and God that led us to the find. I was very disappointed and again in shock that I had more and would have to do more surgeries and possibly radiation.  My whole point of going extreme was to avoid radiation.   On my left breast i started to leak from the bottom and little by little it started to split open. My skin was dead and black and looked like a burn victim.  I had a follow up with the plastic surgeon and he didn't like the look of the skin but wanted to try and hold off and do surgery at the same time the breast surgeon was going to for the rest of my lymph nodes.  He was trying to prevent me from having more surgeries then I needed.  By March 27th my expander had actually started coming through the skin and had to go back to my plastic surgeon.  My surgery for the lymph nodes was scheduled on the 1 of May and we were trying everything we could to make it to that day.   He looked at it again and said its not infected lets try and hold off until the 1st.  Well the weekend came and by Sunday it looked a lot worse and was now pink and pussy I was now running a fever.  I called his answering service and they advised us to go into the Emergence room.  We were admitted and they pumped me with antibiotics and little by little my fever rose and on 30th of March went into to surgery and took out both implants and all the dead skin and infected skin.  Then kept me one more night to make sure the infection was gone.  I woke up feeling better and the fever had gone down but I was still sore.  I was able to move better with the expander's out but was more upset at having no breast then I thought I would be.  I was release from the hospital on the 1st and had my husband take me to get the camisole with the fluffy boobs that you can put in your camisole to make you look like you have something.  Mentally made me feel better.  The plastic surgeon didn't think we would continue rebuilding for 3 months allowing my skin to heal before we started up again. I know in that amount of time I will be in public and I will probably have to go to work and even though I didn't care if people knew they were little pillows I didn't care it made me feel better.

May 2- I think I caught everything up and I am sure I left out a lot and will go back.  I thought this blog would help me to look back and see the things I have conquered because I know this is a long road ahead.  I had planned my sons 3rd birthday party for the 4th weeks before when I thought all was golden and didn't know of any complications.  I was worried about making it but today I feel good and think that things will be ok.  On the last surgery they took the 4 drain tubes out and put 2 more back in.  I hate the darn things but 2 is better then 4 and can deal with it.  For now they are saying my lymph node surgery will be the 9th so I am hoping that goes well.  Just from the little they did take the first surgery my left arm is sore and numb on the back so I am expecting that it will be worse.  I know longer have stitches rib cage to rig cage after they took the expander's out I just have about 4 inch incisions on both sides and am kinda concave in some spots.  Keep reminding myself this is temporary.  I was a double D before and I am ok with not being that big again but I want something.  I am not a petite girl and just want to be in proportion.