March 2014 Surgery

lovemytwinz

Hi, this is Brooke's mom...surgery went well but having trouble managing pain.  Will be staying another night at hospital to get under control before going home.

Kazzy115

Best wishes to Brooke and hope pain gets controlled quickly.  Will keep her in my thoughts today. 

vlnmama

Keeping Brooke in my thoughts too. I had to stay an extra night in the hospital too, albeit for a different reason (passing out due to post surgical anemia). It does get better! Best wishes for a speedy recovery.

SpecialK

Hello Brooke's mom - glad the surgery went well. Just wanted to add that for some oral meds are more effective and longer lasting than those given by IV. Once she makes the switch at home she may be comfortable for longer periods. It is super important not to "chase" pain - stay ahead of it by taking the meds at regular intervals. Hope things get under control soon!

vlnmama

Here I am, 12 days post surgery, still with staples and a drain in. The bleeding isn't really slowing down, and it's really mostly bright red blood. I'm starting to believe what my surgeon said could be a possibility: that the drain is poking in a vein somewhere and is causing continued bleeding! It's still putting out between 50 and 70 ml each day, and is very dark red.

I am really hoping that she'll decide that the drain needs to come out on Tuesday. When I went in on Thursday, she seemed to imply that she'll take it out on Tuesday regardless of the output. I feel it stabbing me in 2 or 3 places. The super tight ace wrap does help; without it it bleeds more, and stabs more. I can really see the end of the drain underneath my skin, and it looks like it possibly could puncture through my skin. The skin is also bruised there. I'm almost positive that's what's going on.

I need to make it through 3 more days with those things stabbing my insides... 

On the bright side, other than those drains, I really feel like I'm healing very well. My movement is getting better and better, and so is my energy. I actually slept 7.5 hours and only woke up once last night. Those IV treatments I've been getting at my naturopathic doctor have been so helpful. I've actually GAINED weight this time compared to where I was going into surgery. And I know I have those IV treatments to thank for that; I lost more than 5 lbs after my lumpectomy! I was finally slowly starting to gain some back by the time I had to go in for surgery again, and really couldn't afford to loose anymore weight. So I'm very happy that not only did I not loose any, but am gaining so soon after! The woman that was sitting next to me getting her IV treatment yesterday morning was doing chemo also (aside from the natural IV), and said that thanks to those naturopathic IV's, she had virtually no side effects from the chemo, while she was having them before she started the natural treatments. Once she started them, her appetite came back and her hair grew back, while still doing the same chemo! I think that's just amazing! Unfortunately my naturopath chose the wrong time (for me at least) to go on vacation, so now I'll have to wait 1.5 weeks before my next infusion. At least I got those 3 in since my surgery. 

If it wasn't for those drains, I'd probably try to play my violin, even if only for one minute, but I'm too worried about those drains causing even more trouble if I did that. I also have enough energy to go for a walk, but again, too scared about those darn drains. Only 3 more days.... Trying to stay busy with other stuff, which isn't all that hard with 2 kids and a husband! LOL Made a big batch gluten free banana cocoa muffins from scratch early this morning.

sandra4611

Vin, I'd hold off on that walk for now. Activity makes drainage increase. Except for the very first day, my drains always went to a watered down reddish color quickly, losing color every few days until it got to an orange-yellow color. I don't think I ever got a drain out before 2 weeks. Mostly it was 3 weeks or a bit longer because my PS is conservative and output has to be under 25 for two consecutive days.

I wonder why you are seeing only bright red drainage at 12 days. Is it thick like blood? You say you can see the end of the drain under your skin? Where? Is it shaped like the tubing outside your body? The drains go into your body 8" - 10" and most of it looks like a flat shoe lace. You can't feel them. My husband said you could see it moving under the skin when it was being pulled out across my chest, but it was not noticeable otherwise.

mtwflip

I just had a bilateral mastectomy with sentinel node removal and initial reconstruction on March 20.  I'm having a little bit of a hard time with this all.  I did chemo before surgery for about four months and did very well with it all.  I continued to work full-time and take care of my family while still exercising vigorously.  Everyone keeps saying how "strong" I am because chemo didnt slow me down much and I am already up and about a week after surgery.  But i don't feel happy - I feel alone.  No one can understand what this surgery is like unless they have experienced it.  I'm sad, I'm angry and I'm finally getting tired of being the "strong" one.  When i try to talk to my family or my husband, they (figuratively) pat me on the back and tell me that what I'm feeling is normal and that it will go away and not to worry about what I look like now because after the reconstruction it will be better.

I know that is true, but that doesn't make what I see in the mirror NOW any more appealing.  Also, I believe that the inability to exercise (except walking) is a bit depressing for me as well as I am an avid Crossfitter and used to go 5-6 days a week!  Any thoughts or suggestions that might boost my spirits?

vlnmama

Sandra, hopefully this is ok for me to post; please don't repost anywhere else! LOL

This is the what it looks like, sorry it's a bit out of focus, but you get the idea. This is the beginning of the tube, and one of the most painful spots where I feel a constant "jabbing". This is right up near my breast bone. There is another spot where it hurts, almost, but not quite, under my (left) arm pit, and I feel several layers of tubing there too. My surgeon felt the spot in the picture below, and also said that that's where the beginning is. She said: "I've never seen a tube puncture through the skin, but never say never. I'm not on call this weekend, but I'll be around, so if anything crazy like that were to happen, ask the on-call surgeon to call me and I'll make sure that I'm the one dealing with it". 

linda505

Mtwflip - I wish I had a magic spell to make you feel better about all that you have gone through cause if I did I would use it myself and pass it out to all of us.  I get the same thing from friends and family the "you are strong, you are doing great, keep positive thoughts etc etc etc"  It is all meant well but you know sometimes you just need to cry and cry hard.   And no one - but us - KNOW what this feels like - physically, emotionally.. no one.  This place makes me feel not alone!!  I come here everyday and it helps me deal with the issues and questions and concerns and I don't feel alone anymore.  I hope this place can help you like it has helped me.

vlnmama

mtwflip,

Hi. I'm sorry. I haven't gone through chemo (and won't be), so I don't have any experience with that. I did have a (single) mastectomy on the same date as you (March 20). I opted for single, without reconstruction. We're all different in what is hard on us and what is easier. For me, the end looks aren't all that important, at least that's how I feel about it at this time. But other things are, pain and inability to do things I used to do, so I completely understand you're feeling down about not being able to exercise the way you were before. I'm a violinist, and not being able to play my violin right now is the hardest for me; normally I practice and play a couple of hours a day. It's been 12 days and every time I walk past my violin my heart cries for a moment. I am trying to focus on other things I've been putting off for a long time (such as getting a package ready for my mom and sister in Belgium, getting videos and pictures on DVD and CD for them), and I am hoping to compose a duet for violin and cello (my son plays cello) while I can't play, which will hopefully help my spirits. Do you have something you could focus on while you're in recovery period, either something you've been putting off, or something you like to do but don't normally get around to? Of course it has to be something not physically tasking, which isn't always easy to find.

As far as your confidence about your looks, could you focus on the beauty and virtues inside yourself? We all have them, so I know you do to! As cheesy as it sounds, beauty really does come from within! Which doesn't mean you shouldn't look forward to having the looks you'd like to have (again) after reconstruction, but it might you feel better about yourself until that happens (and probably beyond). 

Sending you gentle (((hugs)))

VintageGal1111

mywflip

Awh we all have so many feelings to deal with. It's a long tough road to travel. I have so many mixed feelings. But so far I haven't really dealt with them, I expect some kind of break down eventually....who knows. I am so lucky I have a hubby, sister & a few close friends who have been awesome support. But honestly they don't understand.

 That is great you did so well during chemo. I did ok, bu no way in the world could I have worked, exercised or kept up with *normal* activities. I got anemic & that sucked. People kept telling me I was so brave. I told everyone I wasn't brave, I just wanted to live so did what I needed to do, step by step, day by day. (lumpectomy & node removal, 5 mo chemo, BMX ...no recon...& coming up radiation, as well as a year of Herceptin infusions)

 I have no advice. I wish I did. Sorry. We are all so different even though we may be going through the same thing. Are you seeing a therapist or do you go to any support groups? I should have done that.  I may still.

Sailon

Juliecc -- 

* My PS recommended Aquaphor (expensive but worth it) on the scar at least daily -- to support healing.  My scars are improving as I use this.  

* I put cream on my skin surrounding the scar.  PS said no more bacitracin after about 2 weeks.  

* I put mini pads (Panty liners with sticky side) on the inside of my compression bra to protect scar. 

sandra4611

So how do YOU feel when someone says, "You're so strong! I couldn't do it"? I don't feel strong at all but I don't argue. Unless they've gone through this, they have no idea. Every day we have to suck it up and find a way to do the impossible one more time because the consequences of not doing it could be....let's face it....fatal.

sandra4611

This is more like it for me. What about you?

mnmbeck

mywflip....just want to give you a 'virtual hug'.  I find that, at least in my circle of family and friends, everyone expects me to be completely incapable...and if I'm not 100% incapable, then I must be 100% better and able to do everything!  And so...when you try to do your best to do as much as you can and be as strong as you can, it kind of backfires.  Because, then everyone sees you as 'back to your old self!!'  I've been  up all day (2nd day after my exchange surgery).  There's a lot I can't do, so I just don't....I can't really reach and pick things up, can't lift stuff, can't put my hands over my head, and I am having PAIN!!!!  But, I figure....complaining about it doesn't do any good, and there are things that I CAN do.  SO, I figure it's good for me to do those things!  My family was all fired up to help when I went into surgery.  But, when I got up and started trying to make my own tea, etc....everyone just sat back down!  The dinner dishes piled up, no laundry done, etc., etc., etc.   I also can relate to the exercise making you feel so much better.  I had just lost 42 pounds (20 more to go) and fell in love with jogging and kettlebells.  Honestly, I tear up every time I look at my kettlebells.  My body had completely transformed.  Now, it's just sliding backward. 

To answer your question (or at least try)...maybe brisk walks?  I was starting to do lunges, squats, etc...anything that wasn't using my upper body.  Hoping to get back to that soon.  But, even the walks will help my state of mind....especially if it ever gets nice out!!

sandra4611

Mtwflp, I could have written your post and I would guess that many of my friends here on BCO could too. I used to be in control of my life. Everything was going well. I had a career as an accountant and every day after work, I'd change clothes and head to the gym to teach two fitness classes with 50-60 people each. My husband and I are ballroom dancers and taught popular classes on Friday and Saturday nights with 25 couples and a waiting list. Saturday mornings I was up early to teach another two classes at the gym. Life was exciting and fulfilling. The plan in January of last year was for me to retire in two years and we could do the major traveling we'd always wanted to. All the money I made in those two years would be our retirement money and travel money. (My husband was already retired.) I was healthy. Never got sick. I could count how many colds I'd had in my LIFE on one hand. Never had the flu. No allergies. Tons of energy.

Then I had a brain stem stroke. I couldn't walk without falling over, had double & triple vision, lost my voice and hearing, and my life came to a screeching halt. I had to quit my accounting job and obviously could no longer be a fitness professional or dancer. There was no money and I did not qualify for disability. I was forced to apply for early retirement at a greatly reduced amount. My husband drove me to one doctor's appointment after another as we worked through this major life event. A month later I was told that one of the tests showed I had a large 4.125 cm aneurysm in the ascending aorta of my heart which needed open heart surgery if it got to 5 cm. That is what killed my grandfather and uncle. Now I was a ticking time bomb on top of everything else and went from no meds to 20 a day. Just as I was making progress in rehab with my stroke, had my voice and hearing back, still had major sight problems but I had learned how to walk with a cane and not fall over, I remembered I was six months overdue on my annual mammogram. You guessed it. Breast cancer. Three life threatening things in six months? Seriously? After my BMX I got a terrible infection and for the last 7 months I've gone through surgery after surgery. People said, "You're so brave." I wasn't. I was trying to keep a positive face for everyone else because when I showed emotion, it upset everyone around me. Other women with breast cancer had it SO much worse. My cancer was nothing. We'd caught it early. It wasn't invasive yet. My suffering was nothing. I didn't deserve to have people pity me. I was embarrassed when people called me a survivor.

My friends who had been there for me at the beginning of the year began to pull away. I was just too needy and too toxic (and maybe they thought I was contagious?) I stood at the top of the stairs one morning and said, "Why am I fighting so hard? For what? My life will never be the same and our future is bleak. I look like a Frankenstein monster. I have chronic pain. My husband is stressed to the max. It would be so easy to toss myself down the stairs and be done with all this pain. Fortunately I had a doctor's appointment that day and it was apparent to her that I was in trouble. She got me in to see a therapist later that day and I started getting the help I needed to get through all of this.

Girlfriend, I UNDERSTAND. So do many many other women here. You will get through this part of your journey but you might need a little help. No shame in that. Come here and let it all out. Have a major pity party. Vent. Complain. Cry. We've been there and are here for you.

fayth

Hello All!! All is OK with me here. I saw my PS the next morning and she was not concerned with what she saw. She feels that some swelling went down from my surgery, which may have caused a pocket. She said the body will automatically fill any void with fluid, so it could have been just a buildup. She gave me a 50 cc fill to counter the problem. Yeoch. It took a little while to get used to that feeling, but I am OK now. Well, not OK. I don't like my tissue expander, but I chose to do reconstruction, so I will manage. I now have 100cc,...and it's funny, I am almost the same size as I was before. I am going to take my lemons and make lemonade out of this situation. I am going to go to a small C cup. I will have an implant put in the other side to match in September.

Football~ I gave a little screeeetch when I read your report. My family sitting on the couch with me wondered what the heck was going on. I am celebrating with you,...

mywflip~My advice is to just take one day at a time. My motto has been,...."THIS TOO SHALL PASS". Things are really rough right now. Right now, you are sad,..angry. That is OK. It's not easy, but hold on to each day knowing that tomorrow is a new fresh day. You will get through this. I had surgery on March 14th. My 14 year old son had surgery on March 18 to remove a brain tumor. I could not be with him, and I was so angry and so sad. In the Fall, after 3 years of fighting, trying to find the reason for his head pain, we finally found out what was wrong. Just as we were coming to the end of the tunnel, planning his course of treatment, I was diagnosed with Breast Cancer. I could not breathe. I just had to keep saying,.. one day at a time. THIS TOO SHALL PASS!! I didn't have a choice. Today, we are both recovering together, watching movies, and he is doing awesome. His head pain is GONE!!! It passed. Hold on,... you will get through this. xo

Frostecat

Sandra, you are a true inspiration!  Thank you for getting this "club" together and the many great posts.  I can not begin to tell everyone here how much this has helped me work my way through all of this. The support and advice has been incredible. 

Mtwflip we are all here for you.  As far as everyone tellng me how "strong" I am, my answer is "I'm really not, I just don't have a choice".  I too am being told to think long term results, and I'm trying to but right now it is very difficult.  When I took my first shower I asked my DH to cover the mirror in the bathroom, I couldn't look.  My new mantra is "One day at a time".

KellyGreen

End of day three after BMX with expanders. The pain from the radioactive injections before surgery was probably the most pain I've had to date. At first I was irritated no one warned me of this step but now realize I just would've worried about it - but wow!! And then peeing green for two days while the dye cleared my system was also a surprise! My surgical bra has Velcro loops on the bottom for attaching drains. I've just now found that attaching them opposite from the side where they come out keeps them closer to my body, looks better under my shirt, and I'm less worried about them catching. So far so good; first look and shower today! I've been managing with Percocet; most of my pain is from the expanders stretching the muscle. The fact that I elected to do this part is helping me cope!  I just today have muscle twitching in my left side (the sentinel node biopsy side) and I started getting some intermittent shooting pains from the drain site which I think may be from the swelling going down. I'm interested in how everyone is coping the first week post-op, particularly if all this sounds common, if they are using the compression bras more often than not and who has plans to use anything like vitamin  E on their incisions? I am overwhelmed by the number if women I've met going through or having gone through this process and am so grateful you're willing to share!

Kazzy115

KellyG - Glad to hear you are on the mend!  Everything sounds pretty normal.  I'm twelve days post op now from BMX with TEs as well.  Like you, early on felt okay -reasonable and doable.  Maybe 5-7 days in, and when I'd significanty reduced or eliminated pain meds, other, strange issues seemed to appear.  Underside of arms from shoulder to elbow "stung" and were pretty sore - same thing across the top of the chest.  Also felt like I had lumps under my arms - someone described it as "walnuts imbedded under the skin".  How much swelling was real and how much was just due to nerves I wasn't able to fully determine. 

Still have the soreness from nerve damage on the arms and chest but feeling a bit more human.  TEs, however, still feel foreign and hard. They seem larger than my breasts before - I was small and with the skin and nipple sparing surgery, believe they pushed good amount of saline.  

Like you, I have muscle twitches in my pecs that seem to occur with certain movements.  It seem normal but the sensation of having it so close to the skin surface is different. 

For me, the surgery was pretty easy part of the journey and I feel very lucky to have had, thus far, a smooth recovery.

Jenwith4kids

Popping in lend some support to the March surgery sisters!  I had my BMX with expanders, left axillary lymph node dissection and right sentinel node biopsy on February 14th.  So I'm 4-6 weeks ahead of most of you.   There is a light at the end of the tunnel!  My biggest recommendation if your PS hadn't suggested it, is to ASK for physical therapy.  It's one thing to look at a piece of paper to see the stretching exercises and quite another to have someone guide you through them and actually monitor your progress and provide encouragement as you improve.  I think it's especially important if you've had an ALND....my PT does manual lymph drainage, I always feel better and less swollen after my sessions (my insurance qualified me initially for 2x week for 6 weeks).  And this week she showed me how to do it myself.

My TEs are pretty much filled now - at 450cc's - maybe one more fill but not until after chemo which I started the week before last.

I am still a little sore, but nowhere near what I was.  I am sleeping on my side - finally got the pillow thing right for me.  And, drumroll, please.... I laced up my running shoes and made it around the block yesterday.

Do I feel normal?  NO...  can I do this?  YES.

Happy to answer questions for you.  My sister is 10 days behind me, same surgery (without the ALND), there are so many things that we are both experiencing and many that we aren't.  Remember, everyone is different - that's easy to forget, especially when reading these boards!!!

Take care and have a good Sunday!

Jen

I forgot - I wanted to say something about the feeling on my skin under my arms...  it does get better, I think it's nerves.  My PS suggested "retraining" the area by rubbing all sorts of different materials across it - scratch sweaters, silk scarves, soft blankets, towels....  the nerves need to heal and wake up.  

mtwflip

Love this!!  It makes me laugh and that is something that I need right now!

mtwflip

Thanks everyone for the words of encouragement.  It's nice to be able to "talk" with others who have similar experiences.  I am now 8 days post-op and am starting to sleep a little better and feel a little better overall.  I'm hoping that my drains will come out tomorrow - this is a long time to go without a shower!!!!

I'm also starting to feel a little less depressed.  I know that what I see physically will be changing a lot over the next year but I do mourn the loss of what I used to have.  And truly, I don't mind it that much, but I guess I wasn't as prepared for the reality as I thought I would be!  

And ironically, because I have been so "strong" through all the chemo treatments and surgery so far, many people assume that I don't need encouragement or emotional support.  When I tell someone that I had a bad day, I usually get responses like, "Don't worry, you are almost finished." or "The worst parts are over now."  And while both of those statements are true, I'd rather hear comments like what I have seen on here  - that it's okay to cry and cry hard sometimes.

Thanks for reading my mini-rant.  I think I just needed a reminder that I'm not in this alone.  I am now a member of a club that I never wanted to join but I am so grateful that there are other women out there who can help me through.

If anyone going through chemo needs any support, I would be happy to help with that topic as much as I can.

EverForward

Since my diagnosis I, too, have been told how strong I am. I've come to realize that strength is in the eye of the beholder. Ironically, pretending to be strong is just as exhausting as actually being strong. 

VintageGal1111

Wow Sandra, you sure had a lot going on. Thanks for you input here!

bobogirl

Jen, your PS sounds fab.

Just wanted to send healing thoughts to everyone.  I must say, once again, that Sandra is an excellent host of this thread.  You rock, Sandra!

vlnmama

Wow, Sandra. You have had a rough time with one thing after another recently! That has to be so hard! No wonder that at times you feel like that last picture you posted! 

I've had my share of health problems, but they've been spread out over many many years, pretty much my entire life. I grew up with so many food intolerances that I pretty much could count the things I could eat on one hand, and it was the same every single day. And I still suffered from nearly daily tummy troubles. I also had so many bacterial respiratory infections that both our pediatrician and pharmacist always joked with my mom that it's too bad they didn't have some kind of frequent customer rewards! Then in early adulthood I was diagnosed with IBS. Later after getting married I had infertility problems with multiple miscarriages, which at some point got diagnosed as autoimmune caused. Now, 2 kids later (one adopted, and one bio that was not supposed to happen; they're 8.5 months apart), I have been diagnosed with Crohn's disease (a couple of years ago) and now breast cancer. So yeah, there are certainly times that I feel like that bird chased by a tiger! I love that picture, Sandra!!! But, I'm trying hard to not run, but instead fight back as a tiger. For me, guided meditation and hypnotherapy CD's have been tremendously helpful with everything, from the IBS, to the infertility, Crohn's and now this, that I've dealt with. 

But it's hard at times, for sure. Right now, I'm trying to not feel to sorry for myself with that stupid drain stabbing me day and night. I'm quite sure that's what's causing the continued bleeding. I have been monitoring it a bit more carefully, both my records, and what's actively going on in that drain. Every time that I'm in less pain at that one point (of which I posted a picture yesterday), the drain seems to stick out a little bit less, and the bleeding slows down dramatically and very suddenly, and the color also changes pretty quickly to more brown and less thick. Then at some point the stabbing pain comes back, and I can actually see the difference there: the drains pokes out a bit further. When that happens, the bleeding increases quite suddenly, the color changes to a more dark purple, and it is slightly thicker. This can go on for minutes or hours, some nights throughout the night, or a whole afternoon or morning. I am trying to find ways to improve this with my tight wrap. I got another, narrower ace wrap, and cut a couple of pieces off of it and have pinned them to the wide ace wrap (the one across my chest), over my shoulders. This seems to help quite a bit, but not always. Right now, this increased stabbing and bleeding has been going on for 12 hours again. Have been taking several doses of homeopathic arnica (200 C), which does help some, but again, not enough. 

I am really hoping and praying that my BS will take out the drain on Tuesday.

But this is my positive thing to look forward to today: a good friend who used to live near us, and moved out of state, and is from Belgium (even from Flanders) too, is visiting our area, and I get to see her today!!!! So excited! I used to teach her oldest violin lessons. It's been 2 years since I've seen her, and I can't wait!!

sandra4611

Calling all Surgery Sisters! The big beautiful Pink Bus will roll out tomorrow morning for the final time in March to provide a ride to the hospital.

We will escort Warrior50, who will be having a mastectomy on the left and a reduction on the right, and Southernbling, who will be having a BMX with tissue expanders placed. Everforward had so much "fun" earlier in March, she is having a second surgery tomorrow as well. We're behind you 100% fellow Sisters.

sandra4611

I found a cute way to commemorate our membership in this group of Pink Bus friends. It's a charm for my Pandora-style charm bracelet and is inexpensive. Here's the link

http://www.ebay.com/itm/Pink-Trolley-Double-Decker-Tour-Bus-Dangle-Bead-for-European-Charm-Bracelets-/191118467803

sandra4611

Vinmama, your photo is certainly concerning. I'm sure no expert, nor have I seen enough to know what I'm talking about, but surely your doctor should see it. The swelling combined with the pain just can't be good.

Your story brings tears to my eyes. Bless your heart, you've been through so much and now breast cancer. It's just not fair that some people have more than their share and others skate through life, unscathed. I guess that sounds cruel. It's not that I wish bad things on anyone. I just hate it that some people suffer so much.

Belgium is my favorite place! Brugge is my favorite city. I've been there about ten times and still dream of going back. My husband is a retired Air Force pilot and during our 5 year assignment in Europe, we traveled every spare minute. Fortunately we happened upon the magic of Belgium early so we were able to spend lots of time there. Here's hoping you have a lovely day with your friend.