October 2014 Surgery Sisters

Sharpei so glad to hear your doing well. I remember my first shower even today. I had a lot of bleeding because surgeon, he wasn't the best, took out 18 nods to check, no dye for him. I had to wait for the drains to stop drainingg so the shower was heaven, that's when I stopped wanting to strangle the surgeon. 

I just got back from core biopsy, because of all you great ladies info there were no surprises. Had a great doc, but I knew everyone thought she was the best, she came in and patted my arm and said I will take care of you. There was a lot of those punching sounds going on, mostly on the side without the lump. She said that was the most worrisome, 5 mm mass. She said her mother had breast cancer and kindly offered me the name of the surgeon that did her mothers surgery if I needed one. Now comes the wait. You all keep me thinking positive because of your courage, and on those days courage takes a vacation, your support and humor for each other.

Ocean, yes I "acquired" the infection sometime during the surgery. A few hours later in my room, my temperature started rising and the skin (on the part of my left implant that I could see) was a sickly lavender color. I had been on IV antibiotics from just prior to the surgery. Somebody or something in the OR gave me a very serious gram positive staph infection that was resistant to antibiotics - fortunately it wasn't MRSA. It took 3 days of trying new IV antibiotics to find something that starting working - IV Vancomycin which is apparently called the antibiotic of last resort. The infection killed parts of three muscles and lots of soft tissue and skin on my left side, including about 1/3rd of the tissue covering my left implant. Yes, I stayed in the hospital a week because the PS planned to take me back to the OR each day, but kept cancelling and rescheduling because some of the tissue looked like it might survive. (He kept saying he was waiting to see it "declare itself.") I was in a depleted state, had two blood transfusions, and was weak as a kitten during the week but things started going my way. The PS decided I would be better off at home with my IV and a visiting nurse until it was obvious there would be no more improvement. (I sneaked a peek for the first time in my big bathroom mirror and my knees went out from under me. It looked so bad but I felt fine. So weird.) On day 14 I had surgery #2 to remove all the dead tissue and muscle and to take out the left implant since there wasn't enough good skin to cover it. That's when I got a TE on the left side. The other side was fine the whole time. Vancomycin is a fantastic lifesaver but can really cause problems with your liver so you have to have blood tests after every 3rd dose. They put in a PICC line a couple days after the BMX so I didn't have to get "stuck" a million times. I was on IV Vanc a total of 5 weeks. I started out with 4 drains and finally got the last one out and the PICC removed 5 weeks after the BMX. THAT'S why I worry when I hear you guys say you are seeing pink or red spots and your fever is up but you're going to wait a few days before seeing your doctor. Take it from me, you don't want to take a chance. An infection can devastate your body quickly. Did I scare you?

Love the attitude Akita.   Keep riding it.

Yeah, it sucked to come home with a BIRADS 4 report in my hand that day.  It felt like the world had stopped.  I had flashes of myself five years earlier, sitting with my radiation plan at the subway station on my way home, crossing off one more visit and counting how many were left until I would be done.   The biggest difference for me with this round was that i didn't have a child before.  Everything now is filtered through the prism of my wanting to protect his innocence for as long as I can, and to be there for him when he negotiates through his life after.

Thankfully, the shock phase is now in the past.   I'm focusing on all that is positive in my life.  Besides having a lobular carcinoma picked up so early,  due to being out of work for the last 5 weeks, my son has started falling asleep earlier, a battle we had been having for almost 2 years.  I got to be home during my all time favorite month of the year, lots of walks in the neighborhood watching the leaves change.  My husband and i haven't had this much time together since we met, and he proved to be a tremendous support that made a huge difference to me.  I'm going into my second week of falling asleep without taking any sleep medication, and as a chronic insomniac who just went through the worst flare, that's saying a lot.  

Basically, I kind of wish I could retire now, but work is missing me and I'll be back to the grind on Monday.

I"m going in for fill #3 today.  We are at 300 ml, doing 60 at a time.  They really are uncomfortable and I don't know if that is due to the prior RT.  

I actually had a great cosmetic outcome from my lumpectomy (with re-excison for close margins) and RT such that other doctors, like my OB, had to ask where the surgery was.  PS said that he was surprised because if he didn't know I had RT, he would not have noticed it.   

None the less, I really do not want to face this for a third time.   My way of dealing with it is not feeding it with any mental energy.

Glad to read everyone's updates.  This board has been a tremendous resource and support to me.  We are all moving forward!  Thanksgiving is coming!

Good morning ladies! For some reason I was down yesterday. I haven't had this much time off work since I had my son 9 yrs ago and these 4 walls are starting to close in. Too much time to think I suppose. I have so many wonderful people checking in on me and I've been texting like a mad woman but it feels like I spend so much time reassuring others that I'm ok, getting better and it's going to be ok and then I start thinking about the possibility of chemo and the fact that I'll need more surgeries (reconstruction) and how I'm still so sore and will I ever feel like my old self again and it just drug me down yesterday. This is hard!!! I don't want to feel sorry for myself and I know I'm not alone but it is still just so overwhelming. I'm sorry for whining. I don't want to whine to my sweet husband who is trying to deal with all of this too and I need to be upbeat and positive for my son and I know worrying won't change or fix anything, yet here I am.....

Hi all,

I had my surgery Oct 20, 5 hr surgery and 3 hrs in recovery because of pain.   Had bilateral masceotomy.   I had 4 drains total, down to two now, but still producing fluid and they won't remove till it gets lower.   I need to know if anyone has experienced what I am having.   They put chest expanders in my chest after the breast surgeon did her thing, plastics doctors finished surgery.   I have some pain in my back and my chest feels numb but yet it hurts still.   How long will this last?   The aches are worse first thing in the morning.   I can't even lay flat in my bed, I'm in a recliner at night sleeping and that is the only position where I am comfortable.    I am a mess.   The first time I saw myself I broke down, grieved I supposed.   But I look at the scars and the stitches and I still am in shock.   The final pathology came back, that I had a 2.5 cm mass removed Invasive lobular carcenoma, lymph nodes were negative, but I just still can't believe this is happening to me.  I see oncology doctor next monday to find out if I need chemo.   My cancer is hormone related.  Had genetic testing done, which came back negitive.   But the thought that lobular carcenoma can spread really concerns me if it is somewhere else in my body.   My husband died 10 yrs ago from lung cancer, and I guess part of my emotions are because of what I went through with him.   Are these aches I experiencing all part of the healing process?   Will they get better?   What is it like when they start to inject the cc's in the chest expanders?   Will I be in pain again?   When they do the finishing reconstruction will I have drain tubes again, cause I don't think I can handle that again....these tubes I have know hurt when I am drained, the one sits on a nerve.  Please give me some positive feedback, cause I need it !!!

Good morning all!   Fourminor, thanks for reminding me of all the good things to focus on!   

Thanks Sharpei, I had terrible heartburn in middle of night Wednesday that had me wondering and wouldn't let me sleep any longer.   Your post reminded me that my DDIL with good intentions had come over with McD meals on Tues.  Aha!   I have now had extra Raisin Bran cereal, lots of warm water and a stool softener.  Those darn narcotics and anaesthetic sure wreck havoc with our systems!   Hopefully it won't take too many OR trips for Cupcake to emerge!

I'm so glad you're having a better day today Hummingbirdlover!   We're humans and Moms and bound to  feel that way.   I find my standard answer these days is "I'm fine... just sore"   I am fine but the just sore doesn't even begin to describe it   I can't wait to find out my latest path report and yet if it's bad news again do I want to?   Right now I'm oblivious but still worry about the what ifs.   Gentle hugs and I understand

This waiting and what ifs are really hard edukes!    You will feel relief once surgery is done and then you wait again for the pathology report but then you will know what you need to do to beat his Cancer !  Hugs to you!

Good Morning, Ladies!! OceanSky, thank you for posting that link to the tattoo artist---that woman looked amazing! So encouraging!! I loved also how she kept her sense of humor as much as possible.  I have definitely been doing the same, though it's certainly not all laughs. I am a few months away from TE's now, but so awesome to see a really positive end result after reconstruction. Su-CQ51, I so get the standard answers when people ask how are you doing? Mine tends to be "getting better each day" which is true but doesn't tell the full story for sure. Your comment about the mole made me actually pull my shirt out and look down--I too have a mole on my left side, I guess it survived the cut.You are right---the things that enter our heads. Hummingbirdlover, I am so sorry you had a down day.  This is all so freaking overwhelming.  I feel like I always have a tape playing in my head " you have cancer, you have cancer..." although now I'm trying to change it to "had"....LauraW68, you described that under arm/bicep feeling perfectly, it is so creepy and annoying.  To everyone else, gentle hugs and love from California.

Good to hear from you, Lilith, and glad to hear that you're holding up pretty well. FWIW - no one should feel anything other than relief when they avoid unpleasant surprises or unwelcome news. No one gets any gold stars or better karma for having a tougher situation than someone else. Yes, sometimes I'd LOVE to be in the situation of saying 'nothing in the nodes, thank God', for example, but the fact that someone else CAN say that doesn't make my situation any different, so why shouldn't they be happy that they've escaped that issue at least? 

Please don't beat yourself up unnecessarily! 

(Besides which, it seems to me you've been dealing with plenty in your own way.)

I feel the same way.  This is not a "misery loves company" type of situation.  I am happy and encouraged to hear about good outcomes for others. 

Su-CQ51, yep doing my ROM's.  I just wish that feeling would get better already. I know, you can't rush things but it's so stinking annoying. lol

LeeLee52, glad you understood what I was talking about... well not glad you are experiencing it too.  I even had my husband and a sweet friend look at my bicep underneath to see if it wasn't raw or something. They said no it looked normal. It sure doesn't feel normal. ugh!

Well nurse from PS's office called back and said what I am feeling in my arm and chest is normal from not only surgery but also the first fill. I asked if the PS filled my TE's any at surgery time. Yep. 250cc in each side. So with the extra 50cc on Wednesday in each side, I am up to 300 cc.   I am still not happy about having to wait until after all chemo and radiation is done to get my new foobs. Nurse said Dr. usually waits 3 to 6 months after all that is done before he'll do exchanges. It will be sometime between September and December of 2015 before I get my new foobs and fipples if all goes well with the chemo treatments then the radiation. phooey!! off my whiney soap box now.

14 days out and I had both drains removed today, yay!  I didn't think it was going to happen because a few times in the past 3 days I've been over the 20ccs that he said was the max. The majority of you have said it didn't hurt but I still broke out into a sweat when he said they were coming out!  Definitely a weird feeling, I had to lie down for a minute afterwards because it made me nauseous and light headed. 

I think I have the same arm pain that some of you are talking about...if I run my fingertips up under my left arm from the elbow up it hurts...feels kind of like a really bad sunburn, it's just surface pain because about halfway between my allow and armpit it's still numb, through my armpit and the left breast. This was the side with the nodes taken out. I had the same feeling to a lesser degree on my right arm, the numbness wore off about a week ago and the skin pain is almost gone. 

My instructions are to wear a sports bra 24/7 for another two weeks, then a bra during the day without under wires. Two more weeks before I can submerge myself underwater in a luxurious bubble bath...I'll be counting down the days. 

Sandra, if you read this I double checked with my PS about the size of my implants...I had thought he said 750s and then you posted that 725s were the largest made (from a particular brand?). Yikes, that scared me, I don't want to be huge!  Turns out I have 575 rounds...whew!

Good luck tomorrow with your ALND procedure, Akitagirl!  Wishing you negative nodes!

I'd be up for a book club but perhaps a thread to discuss it over the course of a couple of weeks would work out better for some people than just one day. I don't know, though, and would be interested in hearing what others think. 

The Emperor of All Maladies is a fascinating book. I heard the author interviewed on NPR a few years ago and was so impressed with his articulateness that I put myself on the waiting list at the library for his book. It's dense but well worth the time - and very well written. It gave me a much greater appreciation for the enormity of the challenges involved in treating cancer, much less curing it. 

On the other hand, speaking of tomorrow being another day, I have NEVER read GWTW (have only seen the film once) and have had it on my summer reading list for a long time despite the fact that it's apparently not all that great as literature. Maybe this is the year I'll finally get around to it. 

SCMom - so glad to hear your drains are out. That must feel so much better!!

There is a BC.Org thread called Book Lovers Club that I've been on since last year. Here's the link: https://community.breastcancer.org/forum/7/topic/750637?page=148#idx_4421  The group posts recommendations for all types of books from best sellers to classic literature. We don't as a rule discuss or recommend cancer books so it's a nice "get away".

As much as I enjoy reading and look upon having the time to read as one of the only positives that have come out of this experience, sometimes I simply can't read. I always take a book to the hospital and never once time have I even opened it. During the first few weeks of recovery I can't seem to settle some private place inside that allows me to get involved in a book. I can read the newspaper or even a magazine article, but even a short story seems overwhelming at those times. I always snap out of it after a few weeks, thank goodness, and I know now that this is quite common after surgery.

I would recommend you start a thread with a title like Book of the Month Club. Have you ever been involved in an actual book club? Mine has met monthly for over 8 years. We've experimented with lots of ways to come up with book titles but group consensus won't work online. Someone has got to make the decision instead. It's best to stick with books that are readily available at the library rather than popular best sellers. It's expensive to buy a new book every month and if you want to borrow it, sometimes you have to wait so long at the library, you can't get the book, much less read it within the month. Publicizing the titles for three months in a row allows people to read ahead or put a hold on a book at the library and hope your name goes to the top of the list in a month or two. One year we let the 12 members decide on their own. They got to choose the book for that month and led the discussion when we met. It opened my eyes to authors and books I might never have read. Pearl S. Buck's masterpiece The Good Earth was one of those as well as several books by and about Ernest Hemingway. Others good reads were To Kill a Mockingbird, Gone with the Wind, The Secret Life of Bees, Atonement, The Hotel on the Corner of Bitter & Sweet, my all time favorite book in the world The Shadow of the Wind by Carlos Ruiz Zafon, and Snowflower and the Secret Fan. There are a hundred more.

I read The Emperor of All Maladies: A Biography of Cancer early in my breast cancer journey and have since recommended it to probably a hundred other women, all of whom had positive feedback. http://www.amazon.com/Emperor-All-Maladies-Biography-Cancer/dp/1439170916/ref=sr_1_1?s=books&ie=UTF8&qid=1415339294&sr=1-1&keywords=the+emperor+of+all+maladies The size of the book is a bit daunting when you first see it and you should feel free to jump around in it. I read it from cover to cover. The author is an amazing physician who tells the tale of cancer like a famous author. He is absolutely gifted in that regard and can turn what can be technical descriptions into understandable info for the lay person. Although the book is not just about breast cancer, he speaks of it often and focuses on it over and over. It's fascinating to read how researchers work and you will feel so much better about the strides that have been made to eradicate this disease after reading this book. It's so complicated that it's amazing we ever get it in the first place. It takes thousands of seemingly random events and mutations for cancer to get a foothold. Someday they will find out what causes it but until then, you will feel better reading the extraordinary path these researchers have to walk and why it's so difficult. The author makes you understand what a HUGE task it is and that we are only scratching the surface of understanding. 

I loved that picture and saying, Sandra, thanks for sharing it. I know that's so true. I have 3 friends who are BC survivors and they have been a huge support for me and I know my story will help others in the future. I love to read and a book club sharing could be really fun but I haven't picked up ONE book since I've been off. I can't seem to want to read and that surprises me! 

My thoughts and prayers are with Akitagirl today. I hope you breeze through surgery and that your nodes are clear. Also to those who are meeting with MOs or getting test or path results today, we're hoping for the best possible news for you!

Happy Friday ladies! It's so amazing how many of us are here and it's just a one month snapshot of surgery sisters - and to think there is a thread like this for every month? Wow!!

Take care and have a blessed day and weekend!