Mastectomy Sept 2011
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I'm back to walking 2 miles agian and will try some Pilates later today. As part of my spiritual healing I'm getting a Malltese puppy in a few weeks. His name will be "Mojo" because I really feel like I've lost my mojo after these last few months. We've always had large dogs and our current dog is getting elderly. I can't see myself living without a dog so I've been lobbying my husband about it. My hubbie said I coud have a dog only if it didn't shed and was small. I don't think he thought I was serious but I am 'cause I've sent off the deposit. I'm actually sort of anxious about having a little dog - I know what to do with larger puppies but this little guy will certainly be different. I'm very excited and he's already making me happy!
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Topless, enjoy the puppy. I had a Maltese poodle mix for 16 years years and she was our great love. I currently have a Pomeranian and a chihuahua min pin mix. They are both a bit crazy but we love them. Caryn
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Hi Ladies, I hope everyone is on the road to recovery!
I wanted to see how many of you that had bilateral mastectomy this month, are having any kind of upper back pain. I had my surgery Sept 7th and when I woke up from surgery my upper back/neck area has been very tight/knotted and painful. Don't get me wrong, I am doing well, but I continue to have this pain. I talked with the PS about it this week and he suggested I do some massage therapy for that. I think the way I hold myself is so different than when I had boobs. Maybe even having a little balance off. I have been doing stretch exercises, but I am not getting much relief. I would not have to take any pain meds at all if I could get the back to stop hurting so I am taking about 1 a day.
Still having some energy issues, but I am back at work part time. I will be showing property this monday to a new client. I am anxious to see how this will go. I even had 4 closings in September and managed to go to a few of them! I have also had increased reflux since the surgery. I have been taking Nexium since before the surgery. I get the chest pain so bad some nights and it will last 2-3 hours. I thought this was strange, so I wanted to see from others if they have had these same issues. I was able to start my fills this week, it didn't hurt, but it felt weird. The muscle fluttered when they put the needle in. A strange sensation, like an outer body experience! I am back to cooking, laundry and simple household things. Although I am anxious to get all my energy back! I am very proud of all of you here with the recovery. I think we all ROCK and feel so blessed to be doing so well. I hope everyone is enjoying this beautiful weather. Makes me want to go to the beach for a vacation, and I may do that! I would love to put my feet in the sand. Let me hear from you about the back pain. Keep up all the good work ladies!
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Mojo Puppy !! Our animal friends bring us such joy - I am happy for you.
Babycakes - I did the Bilateral with LAT flap reconstruction - I have back pain only when I over do it - but my shoulder and neck do give me problems sometimes on the LAT side.... but I am going to consult with a PT next week - and hopefully the exercises will adjust some of it.
I have had the reflux a couple nights for sure - but some nights it is okay.... So many changes my body doesn't know what "normal" is anymore.
I am just taking it one day at a time.
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Therese - I feel the same way - about having no willpower AND about feeling more like myself. LOL
Topless -congrats on 2 miles and on the cute new puppy!
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Babycakes - no back pain for me, but what you are describing definitely sounds like a muscle imbalance. I'd see about getting some PT so they can instruct you in exercises that are safe for you to do right - stretch the tight stuff, strengthen the weak stuff. A massage could certainly be helpful in dealing with the pain.
I do have severe reflux (many years prior to surgery, take Nexium). After the surgery I had to sleep even more elevated than normal or I would end up waking up coughing due to the reflux. Yuck! I'm pretty sure this is b/c of the intubation affecting the swallow/cough reflex. It is now gone so hopefully yours will get better soon! Maybe try elevating the head of the bed with bricks if you haven't already...?
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Today was better. On 10/13 I will get left nipple removed and implant will probably have to be replaced with a TE. Not thrilled but there was a bit of dcis found too close to the nipple per final path report. They also agreed to do the port placement while I'm under so at least it won't involve an additional procedure. How bad is the port placement, healing wise? Will I be happier having a port? I am having 6 cycles of chemo and I understand they use the ports for blood draws too. Oh and best of all, no mistaken mention of hernia surgery! Hope you all have a good evening. Caryn
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Caryn that's great that you can get the port done at the same time - you got someone to listen to you! :-)
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Ha! In order to get someone to listen to me I had to act like lunatic. My onc called me and prescribed bottle of 100 Ativan tabs and 2 refills! Well, at least I got what I needed. I just hate having to act like a mad woman. Caryn
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LMAO Caryn! We do what we need to do! Love it!
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Caryn, I'm with dancetrancer. You took care of business and finally got them to listen to what you needed. Good for you! You've had enough extra things to deal with. You don't need more pain or anxiety or needlessly separate surgery. Sorry about the DCIS, but getting it all taken out is most important.
chonikel, like yours, my body is so confused about what's what these days. I keep trying to accept the new "normal," which doesn't bear a lot resemblance to the old normal. I had a great morning, answered a bunch of emails (although I didn't get back to my freelance work--not quite ready for that), and then got hit by a big wave of exhaustion.
Babycakes, that's a drag about the back pain you're having. Did you have a lot of it before? I had neck and back pain from a car accident 25 years ago. I woke up from surgery with more pain there than in my chest, which was a bit a surprise. The PT sounds like it could help. Topless, enjoy your new puppy! We have always had big dogs, but now we have a little one. She's lots of fun.
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Hi Ladies,
Dancetrancer - so glad to hear that your ride was smoooooth! Congratulations on your independence - must've felt SO great.
Topless - I love the name "mojo" and I think it's a super idea to get a puppy if that'll perk you up - this time is all about figuring out what'll make us feel better on dark days. Unconditional puppy love is a GREAT mood booster. My MIL's poodle has been here for a couple of weeks and he is just a dear. I had a cat during BC Round I and he was a real snuggler (thought he was a dog) and he got me thru the hard days with lots of love. Enjoy the anticpation, too!
Babycakes - no back pain for me, but I have read on the boards (was it this one? see, my brain's not so fresh either) that it can be a common issue post-op b/c you are moved around in funny ways by the docs/nurses/etc. I'm sure PT/massage can't hurt - and if you get a good PT, they can be like a miracle-worker. I know mine is - I have a reguar guy and then a BC/lympedema expert that I saw and will see. Good luck. Reflux sucks, too - how is it we don't get a pass on the other stuff since we've had to have cancer???
Caryn, you make lunatics look sane. I am SO relieved for you that you got two, two surgeries in one! Ports suck, but I always wished I had one - I had 4 cyles of A/C and you do get NUMEROUS blood draws and my veins were shot on the right side (b/c L was lumpectomies/SNB) - so this is also better from a LE perspective - no poking in your arms. Glad surgery is on the books. One less thing to schedule and now you can start dealing. Your Ativan stash will help you through. Remember, do not be a hero.
Tina - back to Mr. Chair . . . whatever gets us through these first few weeks. I can't imagine the discomfort of the back incisions. It's a whole new level of ouchie. So glad the drains are gone, at least . . . . things will normalize and we will all be HORIZONTAL (or shhh, shall I even say it? on our sides or tummies? again).
Well, as for me, thank goodness last night was better. Yesterday was the crappiest ever. I ended up with a lot of swelling under my arms, sort of in that band where your bra goes. Depsite doing nothing all day, it increased. PS said sounded likely like I over did it on Wed. - really? Did practically nothing - would need to be a corpse to do less. The only thing I can pinpoint I might've done differently is to bend over a few times. Can this (and not lifting or pulling or pushing) do that?? Craziness if yes. Anyway - last night was the nadir. I was so swollen you could see it a bit coming out from the sides - implants felt like they might pop outa my chest. I did two rounds of my meditation CD, took and Ativan, took OFF the bra and went to bed. I slept much better than Wed. night and today the swelling is down significantly - not gone, but hubs agrees, drastically reduced. So I think I might hoof it thru the weekend and see what next week's appt. w/PS brings - unless - do you think I should call on this? My usual experience is that everything gets worse at night - and the NP for the PS said this even in the hospital - that I'd swell more at night and might want to rip open the bra for a period.
Also - no walking for me Wed. or yesterday - my instinct tells me that a very easy, short walk gets things moving and might move fluid - but in a little, desperate poking around on the 'net last night, it seems that even safe walking (no arm swinging, no HR up) can increase swelling. I know a bunch of you are walking at this point - I have done practically NONE. What do you think about a short easy walk today?
I know you're not docs, and I will call mine later this a.m. if I start to feel really awful again - but in your wisdom from experience/your professional experience - thoughts?
Off to have some tea. The other, very very good news, is that the virus is waning and I'm actually thinking that breakfast sounds good - no appetite for 2 days (VERY unusual for this girl!).
Hope people had a restful night,
Sarah
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Sarah - It never hurts to call and ask - but even if they say a short easy walk is okay - you still might have swelling... Our bodies have lots of fluid floating around and I don't know what "normal" is for swelling in response to a) a bad night's sleep b) fight a cold / virus c) walking d) bending e) eating cheetos - i mean seriously - our bodies aren't doing ANYTHING we have seen them do before - how should we know? And it's going to do what it needs to do to respond - we just don't know what that is!
So - yes - rest. Yes - don't over do it. But you need to heal and sometimes that means getting up and taking a slow walk. You have been the Queen of Rest - you are following orders. Double check - but I think your body is probably more responding to the virus in your body than any walking.
I don't know what normal is any more and that is changing each and every day - so we change with it. But we are listening and responding and healing....
Doing the best we can - I am SO glad you are feeling better today - have a nice breakfast with lots of juices and antioxidants .
Love you sister.
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Thanks, Tina! Dave brought up the virus, too - said that was at least compounding everything. I am deciding now that today is going to be a good day - whether I call the doc (I'll decide around 10-11 a.m) or not, I just told a friend that lunch out would be too much, but another that a little visit early afternoon would be great. That takes care of my social isolation issues. My MIL is leaving after she gets me lunch - so I will have a friend followed by a few hours of ALONE TIME which will feel delicious to me. I am not going to shower, so that'll ease up the on the activity, and MIL and I are planning a mid-a.m. stroll w/her dog for air/light/circulation. I'll let you know how it all goes, but like I said, I'm deciding now it's going to be good . . . fake it 'til you make it has always been a motto of mine!
I've said it before, and I'll say it again, don't know what the heck I'd do w/o this forum.
Sarah
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Fake it til you make it - one of my favs as well -
It's not how you feel - it's how you LOOK like you feel - smile and PLOW through - and before you know it - you are on the other side.
Of course I balance this with - some days just PAMPER yourself and get you whatever you want to make it through the day - a milk shake? some cheetos? that top that is SO overpriced? Yup - do it!
Love you sister - let us know how you "make" out
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Sarah, I'm starting to re-think my walking as my form of exercise - still concerned about that slight swelling I have under my arm on the chest wall (sounds like similar area to yours?) - kinda paranoid it could be truncal LE vs post-op swelling despite my PS's reassurances - but I think it is too early to tell at this point. Plus, I'm a worrier, so I'm likely making this out to be more than it is. Regardless, I'm going to switch over to the stationary bike for a few days and see how it responds. There will be no repetitive arm motion on the bike, so that will take that component out of the picture. We'll see. Still, I can't imagine that an easy walk for you would be bad...I was doing a full 20 minute brisk walk with a few small hills, which sounds nothing like what you are thinking of doing. :-)
BTW, I had a rough night - woke up around 3 a.m. from some strange chest pain (which went away), but then I couldn't get back to sleep. Finally got a few more hours this morning. Uggh. Rough start to the day - think I might need to try that fake it til you make it strategy today. ;-)
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Yeah, Lorraine, I'm playing it so safe here, it's comical. 20 minutes brisk is about 180 degrees from what I've been doing - what I did this a.m. was about 20 min. stoll, like museum pace (my surgeon's guide to pacing). Swelling is still here - worried about truncal LE, but also thinking it could be early for that - we are only coming up on 3 weeks. Not going to call PS today - I think they'd either say "yes, you're a bit swollen, but that's normal" or "yes, you're a bit swollen, we're sort of concerned about it but need to see how it goes over the next few days" which brings me to next Wed., practically, when I'm in there in any case. Of course, if something radical happens over the weekend, I'll call in to the service. But I'm so much better otherwise (appetite is back - look out!), and if I take it easy, my gut is that this will subside. Sheesh, you should've seen me last night - I was in tears, fretting, freaked. Talk about a 180!
I'm sorry for your rough night - can you nap later and make up a little time? And do join me in faking it, we'll make it!
Sarah
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Sarah I so understand the tears - I can really work myself up into a frenzy. Guess we are both in a "wait and watch" holding pattern...gee..waiting...haven't had enough of that in the bc process, LOL.
Yep, I can nap later - if my body will let me. I'm so not good at napping any more. Dang, when I was in college, I could cat nap at the drop of a hat anywhere...even on the floor in the student union quiet room (my favorite spot was over the heater vent with my head on my back pack). Oh, the memories. Those were the best naps!
I just got a copy of my actual pathology report. My slides still haven't been sent up here for a second opinion...working at getting to the bottom of what the heck the hold-up is. Actually reading over my path I'm getting myself all worked up...I REALLY want this 2nd op. The path doesn't list any numbers (i.e. mm) on how big my margins are - isn't that unusual? I've heard so many people discuss how big/small their margins are that I thought this was standard practice. I'm not happy with the description of the L retroareolar tissue: "breast tissue with atypical intraductal epithelial proliferation"...I did some reading, and it says there is a big difference of opinion on whether this means the tissue is benign or not - could need to be excised or it could just be a result of the cautery. It also says "DCIS appears close to the resection margin (posterior). However, evaluation is difficult due to cautery artifact." Nothing else is said of this. Also, I was told one lymph node was taken, but in the path report it says on page one that 2 nodes were examined yet pages 2 and 3 it says 3 nodes were examined. I don't understand the discrepancy but will be asking my BS about this.
Whatever the story, glad I'm getting a second opinion on the path.
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Just checking in with all of you through my medication-induced haze. Got a rash that has been itching for several days, started benadryl about an hour ago so that combined with pain meds etc. is hitting my brain pretty hard. I am overall doing fine. Noticed reflux also - never had it before - am blaming it on my dear mom who is feeding me about 3x my normal amount of food, so it's no wonder. Also had really bad sore throat, spasms with swallowing. Have been up walking - did 15 minutes Wed and 25 mins yesterday. Had a couple minor panic attacks when thinking about path reports - not available at least until next week, so trying to not think about it now as there is nothing I can do now except waste precious time worrying instead of enjoying the company of my mom and DH. I think I could go on and on here, but am feeliing quite loopy, so better sign off and check in when I actually have some neurons connecting to other neurons.... 0
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Hey all.
Sarah & Dancetrancer - Fake it til ya make it as needed!!! Hoping you have a better day/night and that the swelling subsides...
I too am anxious to start walking however am trying to hold off until I get my drains out. Unfortunately today was not the big day due to a scheduling snafu at the ps office but I am hopeful for Monday since they are going to work me in after my onco dr visit next door. Thought I would be more bummed but guess I have now moved on to resigned....
Babycakes - As for the reflux, I have not had that issue but am noticing that I am getting heartburn fairly regularly. Not sure why ....
Topless - Congrats on the puppy!!! I have two rescue puppies (one 18 months old & other just turned one last week) who are by my side to keep me company all day while hubby is at work. There is nothing like the unconditional love they give us and they are chicken soup for the soul.....And btw, love the name MOJO!
Caryn - Glad to hear they finally listened to you and scheduled both procedures at the same time. After all, it really does make more sense and why should you have to go thru the drama of surgery twice?
Happy healing girls....Hugs to all
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Argh, I find this site so frustrating sometimes! I just wrote a message, then scrolled back to make sure I hadn't neglected anyone-- and poof -- I lost my message. It's probably me, no techno wizard here, but still! Chonikel, cheetohs? You're my kind of gal. Sarah, hope you had better night. Dancetrancer, I can see why you're anxious about the unclear pathology report. Glad you can get a second opinion. RK87 (Is that right? I'd double check, but don't want to risk losing this note again), hope you've been able to get your second opinion on your pathology report. Babycakes, sorry you're having problems with reflux. I never had that, but like you, I did have soreness and some hoarseness from the intubation.
I had a hard night and morning. I was feeling so great yesterday, and then I crashed. More pain. Walked for about 40 minutes today, the longest distance/time so far, but then I was wasted after writing a few emails. Anyone else having trouble with fluctuating energy levels? I just want to be myself again, not this weepy, tired woman with so little focus. Have a good day you all.
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Stephanie,
I know! Yesterday, I worked out at the gym, had a major pre chemo dental check up and ran lots of errands. Today, I'm still in pj's and can barely keep my eyes open. Normal seems a long way off
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Exactly, Caryn. You went and worked out?? I'm so impressed. And then had a dental check before chemo? You are unstoppable, girl! My big outing is to go get a manicure today. Secretly I'm wishing I could just curl up in my pjs and watch some mindless tv. Worked all morning on emails (and that seems like work these days). We will all get back to our personal bests--and, dare I say it--reach even higher as women and people.
Hugs, Stephanie (aka Therese9) (Quick explanation--I used a pseudonym when I signed up because I was so uncomfortable with the diagnosis of breast cancer. I felt guilty--as stupid as that sounds--that I had come down with such a disease. You know, like I didn't plan well enough orsomething. Plus I live in a very incestuous small town and didn't want to put my private business out on the already too public main street. Now it just seems silly. So, hi you all! This is Stephanie. Whew, glad to be free to be myself. lol)
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Linda - sorry about the rash. Itching is the worst - hope it feels better soon.
Therese - I open a word document and type my responses as I read. It's the only way I can keep track of everyone! Then I copy and paste it into the box (another little box pops up and you paste it in there and hit insert). Oh, and I definitely can relate to the fluctuating energy levels. I notice if I feel really good one day, I can feel like crap the next (and it's not always due to overdoing it).
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Had to call the BS on Wed and run in to see him. He said the reason I was having the issues with pain was that I had had so much tissue cut away that much of the blood supply on the lower half of the sutures was dead tissue. He needed to debrie it. I don't know why I thought that meant cleaning up the wound but no such luck. He cut down into the tissue about a half an inch and took a four inch piece right out of the surgery area. (I didn't feel it although I didn't get anything to numb the pain. A sudden eruption of blood and yellow fluid soaked him and me. He gave it a name but I can't remember it. Once the tissue was gone and the fluid out I've actually started feeling better. I have a huge open wound where the sutures were and have to see the nurse daily to have the dressing changed but they tell me it will shrink down and scar and be better. Biggest issue is no chemo until the healing has occured.
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Oh my goodness, I didn't know if Caryn was losing it, or I was losing it, but Stephanie, nice to know "the real" you! Too funny. Fluctuating energy levels are the name of the game, from what I have read, heard and experienced. This recovery process is a roller coaster and it's NOT linear. Bugs the crud out of me, but other friends who've recovered from other major surgeries confirmed - it's hard, there are setbacks and it just takes time. SO not glamorous or fun. Boo.
Caryn - hang in there - there's the flux - hope yesterday went OK. And oh, just remembering all that you posted about your daughter and such in the last day or so . . . again, so glad you got a break on the surgeries and Ativan and all - you need a break, friend.
Odie - that is a major bummer re the drains. I'm happy you aren't in a lather, but sad that you're still hooked up. Just think how sweet it'll be when you're FREE!!! I am beginning to think I should still have drains - am all puffed up again tonight like a little marshmallow girl. Am currently bra-free and sitting up, trying to de-puff. Hubs insists it's better than last night, but I still feel like my implants might explode.
Linda - nice to hear you, even if you're medicated - we can all relate! YOu're doing great - nothing you can do re the path report, just take this one day at a time. A rash??? Benadryl? I so hope it's nothing like mine was. I feel your itch, girl. And Benadryl + pain meds = wacko. SO been there, done that. Wait 'til you're off the hooch - you will feel like a freakin' rocket scientist, all of a sudden. Will be so nice to have no itch AND be able to read a book/create a comlplete sentence w/o breaking a sweat. Hang in there.
Lorraine - that's a sketchy path. You'll get to the bottom of it, and thank goodness you have the second op. too. You know, you can get a third opinion as well - I did the first time around on a couple of things. If you want to send stuff up here to the Boston medical minds, let me know and I'll find out how. May be overkill - do what you feel will put your mind at ease. And I am a TERRIBLE napper. That's how I know that this is serious business. Although in the last day or so, even being sick, I've only been able to nap about 1 hour. Lots of lying and sitting, but little napping. I'm type-A even in recovery.
Who was it, Odie who talked about cleaning for the cleaners? About not even having them b/c her house was not clean enough? All these things are coming back to me now that I'm more lucid - that cracked me up as I'd had similar thoughts of how ashamed I was Thurs. when they showed up. Of course, not a big deal at all, and much happier for having them, but that is ME too - wacked.
Anyway. Sitting up in bed typing while I listen to my husband rock out in the kitchen to Dave Matthews, making dinner. His mom has gone for the weekend - I had the afternoon alone in my house. It was delicious. I miss my solitude so much. Looking forward to taking it easy this weekend, hopefully will deflate gradually and get to enjoy some great weather on tap for Boston.
Hang in there, friends,
Sarah
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Jazz - wow, you have been THROUGH it! I really feel for you. So glad you got in there and had this taken care of ASAP. I wonder if this was a seroma...does that sound familiar?
Sarah - gosh I hope your swelling comes down more - I know you do, too! I skipped the bike altogether today and just did a very few exercises and very gentle pulleys a couple times - no major change in my mild swelling. At this point I guess no change is good news. Thanks so much for the feedback on the path - happy to see you and Stephanie agree it's sketchy - helps reassure me I'm not overreacting. I will see what UAB says and how comfortable (or not) that makes me feel and then decide about getting a 3rd per your suggestion - thank you! So nice to hear you did the same thing...sometimes I worry that I'm paranoid...
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Jazz - geez! so glad you got help - sounds sorta awful, but now you'll likely feel huge relief . . . sorry that chemo will be put off a bit - that is never easy. you get psyched up for these things. just want to get on with it, right??
Lorraine - you are not paranoid. you need a comfort level and maybe a second op will give that to you - hope so, 'cause it's sure easier! FWIW, this time around, I did not get one. so very situational - so glad you don't have more swelling.
I'm bigger than I was when I posted an hour ago. Hubs says "don't worry, it'll be fine" - how can he be so sure?? nothing to do but wait, now . . . take my ativan and get to bed!
Sarah
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Hugs Sarah! And yeah, knock out with some Ativan - sometimes it really is necessary to shut down the brain!
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Sarah, lol, now you know it wasn't you or Caryn who lost your minds--it was me! Dancetrancer – great suggestion re: using a word doc – Duh? Some days I fear I will never get to be any good at this social networking. J
Linda, the itching sounds like such a drag. Here’s hoping it goes away very soon. Jazz300, so sorry about your visit to the BS on Wednesday and the additional debriding. Glad, though, that you feel so much better with the tissue and fluid gone! Now it’s time for your body to relax, heal, and get stronger! Odie16, bummer re: the scheduling problem at the PS. You must be so glad to see him/her Monday and get those drains out! Do you remember the Elvis Costello line, “I used to be disgusted. Now I try to be amused”? That’s gotten me through a few rough spots. Margie, how are you doing? Hope you’re well!
Bayareaom/Jeanne. Hope your back is feeling better. Like you, mine’s been out since surgery (well, since before then, but heightened since the operation). Allow yourself more time to rest and heal. Groovygirls—are you really going to do a marathon in 12 weeks? Wow. I couldn’t do that before surgery. WTG! Bbbsmom- glad you’re doing well on day five! When I had my drains, the color seemed to go from tomato red to orange red and then yellow red, but it did sometimes bounce back to a darker color as you describe yours is. How lovely, though, that your husband is looking out for you!
Well, I’m still totally pooped. Just had a lovely visit with a friend who dropped by dinner. Sadly her husband was diagnosed with advanced pancreatic cancer (two months before I got my diagnosis). He’s losing weight and they are both handling it with such grace and awareness. Made me remember to be thankful for my (relative) good fortune as well as grateful for her friendship. And I’m so grateful to all you strong, sassy women. Yay for the September sisters! Xoxo, Stephanie
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