Mastectomy Sept 2011
Comments
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Therese - I haven't had any increase in pain (although my spared nipple is very sensitive to any material), but I did get a small amount of swelling yesterday on my ribs underneath my armpit on my SNB side. I had gone for a 30 minute walk and am pretty sure I over did it. It really scared me so I emailed my PS, and he said not to worry. It looks almost back to normal this morning. Need to progress myself more carefully - it's tough b/c as of now my PS has no specific restrictions on me, and it is really easy to overdo (b/c nothing hurts or bothers me while I'm walking, etc.) Oh, and I had my drains removed last Wed, too.
Serenity - glad to see you back and feeling well, minus the itching. Boy do I understand that - I had the WORST time with the tape. FWIW, near the end I ended up taking most of the tape off and wrapping an ace bandage around my trunk LIGHTLY to hold the bandages on. That offered GREAT relief - may want to ask your surgeon if that's ok to try?
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Therese - I just got my last 3 drains out yesterday (started with 6 in the hospital)
and it definitely feels different - almost like they woke up. I had some pain in the right breast last night - and that breast hasnt' bothered me at all - THe left side is the one with the FLAP - so there is lots of weird pain and nerve pain and muscle twitches.
I slept in the bed for the first time last night - propped up on pillows - flat on my back - and my HANDS kept falling asleep - so weird. Anyone have this?
So I think now that the drains are out - i will start to feel weird things - but I am happy happy to not have those puppies stuck to me all the time (my baby hang grenades)
I am going for a walk today - Dancetrancer- i havent' noticed any swelling from this - my husband I walked on Sunday.... but I think everyone's body is so unique and tells us things in different ways - we just need to listen.
Prayers and hugs to all
Tina
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Therese - just responded to you on the reconstruction board re zaps and twinges - check and check! I have been describing the discomfort I feel to people as having bad PMS swelling and discomfort. Just feel kinda uncomfortable all of the time - not enough to really bother me, but an underlying thing.
So atyplical hyperplasia is a controversial thing. Some docs take a hard-line on it (mine) and some are more wait and see (yours). There is nothing definitive on it and you should do what you feel comfortable with. 10 years ago I had lumpectomies - 3, in order to get clear margins. I pushed hard for #3 b/c there was an area of ATH near one of the margins that I wanted out - I felt the literature suggested it might turn into IDC or DCIS. Radiation oncologist faught me, but I did it and felt good that I did. This time, if there had been ATH near my nipples they would've taken the nipples off. If I had had ATH near the skin, even, in other words, margins too close, I likely would've thought twice about my ss/ns BMX choice. But this is ME. You will be watched, like a hawk. If you are OK with it, then keep on w/it - at some point you have to have faith in your team and your body. It's yours! Like I said, it's controversial.
Tina - been thinking about your hands asleep - pretty sure it's just 'cause they were up on your belly/the pillows and your circulation's off. I had that issue in the hospital now that I think about it. Haven't had the problem since home but I'm in a different position. YOu'll find your sweet spot in the next night or so - I'm pretty sure of it!
Dancetrancer - easy, killer! sorry for your swelling but glad PS is not alarmed. I guess that's the good thing about my extreme restrictions - nice clear line that's easy not to cross. And since just sitting and having an animated conversation still tires me out, it's probably a good idea for me NOT to go try power-walking, anyway. This is just SO NOT ME. But then again, how many weeks do you have your breasts amputated? Wild times.
Hope everyone has a good afternoon. I'm off to try to nap a bit.
xo
Sarah
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When do the Steri Strips fall off or do you have to take them off (Ouchie)
It will be three weeks post op for me on Wed,
I am going to have my port put in on Wed and I think I will see if he will take them off while I am under.
My scars are very sensative and have lots of burning and tingling.
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Sarah - That's really what it is starting to feel like - a PMS soreness tenderness kinda thing - funny how I didn't have any of that with the drains but now that they are out it is rolling in ...
Amazing how your body changes by the hour it seems as it heals... from the inside.
So thankful I am able to be up and about as I heal... I wasn't sure what to expect - but I think 2 weeks post-op I am doing really well.
Thoughts of all of you - and thankful for this group!
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TAPPY - depends on how wet you've gotten them, etc. - my PS ripped mine off a week ago when I was in w/my terrible rash - wanted all traces of adhesive off my torso b/c I was so inflamed. Was not bad at all, but I don't feel a lot on my breasts right now (now, maybe never, right?). Great idea to have them taken off tomorrow while you're under if you're feeling like it'll hurt!
Sarah
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When I was diagnosed with breast cancer I jokingly told my sister that I was about to enter the "Pink" world. We are both nurses and have often discussed why all the other cancers and other horrible diseases don't get the same attention that bc does. Since I also have MS I don't have the time or energy to become active for both nasties. I now consider my bc cured and will continue on with my fight with MS. Only braless (I kind of like the freedom of that).
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topless - my dad has MS, has had it since the mid-60's, the DARK AGES of MS. It is an unpredicatable and difficult disease, for certain. When I was dx'd in '01 w/my first BC, he was kinda blase about the whole thing . . . 'cause his attitude was, you can be cured of that, but I can't be cured of this. Fight on, sister. Bra or no bra, you can do this - rooting for you!
Sarah
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Hey all!
Enjoyed a nice lunch outing with a couple of girlfriends today so now I am settling in for a quiet evening. 3 weeks post surgery and feeling really good. Clearly not what I expected....ha ha!!
Hope everyone is healing well and having a good day.
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Odie - sounds like a great day - happy you're exceeding your own expectations - I know exactly how you feel! BTW, I mention you (w/no identifying characteristics but for your humor) in my latest blog post: http://betheweeble.blogspot.com/2011/10/walk-around-block.html - complete w/Tim Conway clip!
Sarah
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Sarah ,
Nice blog and great analogy as I feel like a weeble some days!!! I can't wait to get my last two drains out so I too can start puttering about the neighborhood (afraid to now due to infection/sweating)... Missing Yoga and want to get into Zumba but I guess I'll settle for long walks for now. I am so glad I was able to give you a little chuckle even during a not so stellar moment.
Hoping we all have great days like today.
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I took it easy today - no walks or biking, just periodic gentle range of motion on the pulleys for my arms. When I woke up this morning the swelling that was on the chest wall below my arm looked much better (not 100%, but it actually may have been a bit swollen before and I never noticed it). I also noticed in the shower today that the swelling I have always had in the axilla around the SNB incision line was definitely the best it's ever been. So all around much better today - except I'm tired! I've noticed this fatigue is a delayed reaction for me. Feel fine when I'm doing stuff, don't know I've overdone it til later. Lesson learned...will proceed with even more caution!
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Sarah - congrats on getting out for your first outdoor walk - yay!!!!!!!!! The fresh air does something for the soul. :-)
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Hi,
Had my 1st oncologist appointment today. chemo is in the cards for me now. Now I have to decide between T/C or AC/T for my treatments. Lots of reading for me tonight. The onc thinks I should do the more aggressive one but said it's up to me to decide.0 -
Margie, thanks for starting this thread, and I hope all went as well today for you as mine did yesterday. I had really good care from the time I checked in until I checked out, just took a little while getting the pain meds adjusted to avoid breaktrhough pain yet trying not to be completely zonked all the time. Have lots of little issues to complain about, so I must be doing OK! lol. Unfortunately, the resident couldn't answer just how many nodes were taken for sentinal node as they were massed, and at least one was positive, and she did complete ALD, which I was hoping to avoide, but it isn't nearly as bad as thought it would be. So will play the waiting game to see what final path report is and what next steps are. In the meantime, I am trying to juggle the right amount of rest with the right amount of activity, eating good food, enjoying the company of my mother. She is such an inspriation - 18 year survivor and has good suggestions for me as well.
Gentle hugs to all of you, and I promise to catch up with you all later this week.
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Linda - so glad to "hear" your voice! Sorry you had to have the full dissection, but it'll give good information and help you make the right treatment decision - you want to do this the best you can. So glad you're eating, resting, and enjoying your mother. I hope you sleep well tonight in your own bed and that things continue to go smoothly . . . .
Diana - reading up on chemo is not fun. FWIW, I did A/C and it was not horrendous, I would assume that the ACT is being billed as more aggressive. Taxotere has its side effects, but if things are the way they were back when I got chemo, adriamycin was the one that everyone really fretted about. You've heard your doc and will do the research - just reporting from a side effects standpoint if that's helpful at all.
Odie - thanks! Really, I was chuckling as I had a little out of body moment and saw what I looked like. Totally Tim Conway.
Dancetrancer - I have real issues w/catch-up fatigue. And sometimes it takes a while to overcome, and sometimes I need to lie down for 20 minutes. If I look objectively at today, for instance, I did WAY more than yesterday and I am no more tired now than I was last night, so although I've had dips and peaks today, I'm still counting this as progress. Glad your swelling, etc. is looking OK to you - good for you for being able to moderate yourself . . . some of us are not so good at that!
I'm off to have hubs change my dressings - one drain hole is being stubborn - not infected but not entirely closed, either. This one she had to dig at a little to snip the stitches . . . a llittle owey when done and I think the skin suffered b/c of it. I STILL HAVE NOT HAD A NORMAL SHOWER b/c I'm playing it safe. Sigh. My day will come.
Hope everyone sleeps well tonight.
Sarah
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Linda - glad to hear back from you and that you are doing ok. Sorry to hear about the ALD, but glad it is not as bad you thought it would be. Sounds like you still got that warrior spirit - love the attitude!
Sarah you sure will be CELEBRATING when you have that first full shower!!! Uggh! But yes, better to play it safe than sorry.
New symptom for me today. I was having hypersensitivity on just the R nipple that was spared - now it has expanded to the whole top of the chest and between the breasts. I have a soft t-shirt on and find myself tenting it out away from my skin a lot. I've heard about this happening b/c the nerves are injured and perhaps regenerating...I expect it's a phase...an annoying one...hope it passes soon! Anyone else have this yet?
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Sarah- I really have valued your comments about the chemo as you have always been so positive and always make it sound so do-able. I know it is, but it's always nice to hear from someone who has done it. You are right about the ACT being the more aggressive one.
Hope you get that real shower soon!!
Linda- good to see you back. Rest up and enjoy being home0 -
SAO you do what you know is best for you with the shower thing. I think we each have issues that require we know ourselves well enough to watch personal limitations. You will get there.
dancetrancer- isn't it wonderful what they leave out when they prepare us for the surgery. LOL. I have the same issue and underarm feels like someone has their fist up in it and is continually rubbing at it. My steri strip is still there but am bleeding from every stable due to swelling. I am able to work my arm but Miss Nancy would not be able to ask me for the bend and stretch on the old romper room shows.
All in all I guess we're recovering but I didn't like hearing some of these issue are long term and just like an arm or leg being removed some women can feel pain in nipples and breast area that is no longer there. Hoping I can get past that but I assume it's the amount of damage they have to do with removal and node removals.
I hope your all getting through today and something good happens to each of you today to of set the circumstances we're all passing through. Hugs and Hopes
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Jazz, that underarm thing sounds sooo uncomfortable. Yippee <please note said with sarcasm>. Hope we both feel better soon!
I do have to say the pulleys have really helped me with tightness in my shoulders - so for anyone who is cleared by their doc to do shoulder range of motion, I highly recommend getting them.
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Hi All,
I am happy to read about all of your "ups" and commiserate with you all on the "downs". I am not a complainer by nature and always try to look on the bright side but had a bad day today. I have, to put it mildly, great fear of medical procedures. Yes, I put on a brave face but the fear and anxiety ratchet up each time. I don't get used to things, I grow more fearful each time. So, I kept asking if when they remove the nipple, they could place the port, thereby saving me the agony of an additional procedure. I mentioned this to my onc. I mentioned this to my ps. I don't think they heard me. I am so frustrated! To make it worse, I got a pre- op call. I mentioned my issue to the caller,and probably sounded a bit hysterical at that point. She said, "well, do you still want to go ahead with your hernia operation?" WHAT?? "Oh", she said, "I mean your mastectomy" ARGH! I have already had a double mastectomy!!!!! Call me when you know what you are talking about. With that, I slammed down the phone. I am so upset that I feel I can't move forward with any of this. They do have a therapist who specializes in cancer patients but he can't see me until 10/20. If I were a drinker, I'd be hitting the bottle hard, real hard. Caryn0 -
Dancetrancer,
I have lots of zings,odd sensations and skin sensitivity. Sometimes it's hardly noticeable and sometimes it drives me crazy. I too hope it gets better for the both of us very soon.
Caryn0 -
Linda - Glad to see you back & hope you continue to heal with minimal issues. I am so glad you have your mother there for you so please enjoy the time together.
diana123 - Sorry to hear you will need chemo but will be here for you regardless which combo you chose. Are you attending a chemo class prior to starting?
Sarah - So that is what we smell?! (JUST KIDDING! ha ha) That shower is soooo going to be worth the wait girlfriend and will be the best EVAH!! I truly hope you enjoy every second of it once you decide the timing is right. Hugs!
JDancetrancer & Jazz - I hope that sensitivity resolves for you soon.
To everyone - I wish for a restful, peaceful night and sweet dreams to all.
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It is so great to hear what lies down the road for me! Love that we are all here together. My onc. did not give me a choice about treatment but suggested AC/T also. Someone on another board told me about a test called oncoDX. It determines how affective chemo will be on your specific cancer based on your DNA. Has anyone here had the test? I am going to ask my onc about it on Monday when she returns from vacation...I know, she has a lot of nerve going away on vacation right now
My surgeon emaild me yesterday and said that my other breast did not have any malignancy so I am very happy about that. AND he ok'd me for showers! I took one this morning but then I was so tired! But clean! later I even dried and flat ironed my hair, so I must be feeling better. Big outing tomorrow: doctor appointment! woo hoo.
still no drain removal, but hopefully at my appt friday if not sooner for the one that is producing less than 10 cc per day. the other is still at around 50 so doesn't seem like it is ready. NOt looking forward to everything "waking up", though.
My best friend from college just had chocolate dipped strawberries delivered...it's gonna be a good night!
Jeanne
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Caryn-sorry about your day!! I was thinking the SAME thing about the port-we teachers think alike. WOuldn't it make sense to do it at the same time as the mastectomy??? I hope tomorrow is a better day for you!
Hugs-jeanne
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Wow, women, this is the most negative we've been . . . you know what? I hate to say it, but I think the timing is right. It takes some time for the "high" of surgery and the rush of recovery, of treatment planning, etc. to wear off. You start to get weary of this whole thing. Even for those who aren't going on to chemo, this is getting bo-ring. You just want to be a normal woman again. All is not lost! This is NOT a linear process - there are up's and there are down's. Many of us are in a down. There'll be an up - maybe not a WAY up, like, "oh, sorry, we f-ed up and you don't have to do chemo, after all!" But maybe a day when someone calls and helps you out. Or a friend who truly knows you says something that makes your heart smile. Or you have more energy than ever. Or you can shower, extend your arm w/o a lightening bolt shooting up it, or you walk further, more, or get back to a hobby you had pre-BC. Those moments will happen. Be on the lookout.
For now, who understands all this junk better than the other women here and on other boards?
Jazz - I would NOT worry yet about permanent - this is too early for that. I'm not saying to be naiive, but we are still SO early in the game in the grand scheme. Even though it seems like forever. There was, as you point out, a lot of damage done. Takes a while to regenerate, move on, accommodate. Give it time - but sheesh. That armpit thing sucks. Even after my core biopsy this go-round, I had bad nerve damage so that my right nipple felt like someone was running a Microplane zester over it all the time. I called it "zester breast" and it lasted, seriously, for more than a month. BS said "oh yeah, that's totally normal." So hang on to that, you and Dancetrancer.
BayAreaMom - you're my hair hero. I can't even blowdry w/my physical restrictions - so tired of being puffy. Excited for you re your pathology! Hope those strawberries were delicious last night.
Caryn. You had a horrible day. That nurse was a ridiculous waste of your time. You have no patience for that stuff right now (this is the other curse of cancer - even when you're through this and out the other side and it fades to the background, you will have a hard time w/medical professionals who don't have their stuff together - I am horribly impatient and generally unkind to these people, and while I'm not proud, I have seen what really awesome folks can do/be and I wish they were all that way!). Keep your 10/20 appt. and see what else you might be able to find. It might be helpful to get a little support - this is a new and big step in your process. Keep calling about doubling up the nipple/port thing - that is completely reasonable. Don't apologize for being anxious - this is who you are. All patients are not alike and they will not always have issues that are convenient for their team - tough you-know-what. You need to be treated compassionately and according to your individual needs. It's OK to ask for that. If it's not doubling up the surgery - ask "well, what can we do to make this easier on me?" You CANNOT be the first one with these fears. No way. Don't buy it. I know you're tired, but keep the pressure on. We are behind you 100%. You will have a better day, soon. I know it.
Sigh. And here I am, back up at 5. I'm having trouble controlling the worries re the house, my daughter (just feel disconnected from her - am used to being so hands-on and in-touch), feeling sad that my husband is so stressed out (took almost 2 weeks to deal w/my stuff and was amazing, still is amazing but now is back to a very high pressure job and feeling really overloaded) - and yet utterly incapable of doing much about any of this. I need to let go, but for me, that's one of the hardest things . . . I did meditate yesterday, it helped. None of this is stuff that'll ruin us, I remind myself. I think it's coming down to what I mentioned earlier in this post - I'm getting "treatment fatigue" - it's been since June that cancer's ruled my life (not even that long in the cancer-scheme) and now b/c of my physical limits, it's really messing things up. I'm feeling all done, and yet I can't be. Just need to sit back and calm myself and wait it out, taking each step . . . and grease the wheels w/some chocolate-covered almonds or something. : )
To all of you, take it easy on yourselves today. Thank goodness we're here for each other!
Sarah
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Caryn it is SO frustrating to not feel heard. And I can relate to those pre-op callers not having a clue. A similar thing happened to me. They really need to train them better to deal with stressed-out patients who need some extra TLC...part of that training should be to actually KNOW what the procedure is the patient is going to have. LOL
Oh and I've noticed the odd sensations come and go, too. This is definitely an unpredictable healing process. Last night I had trouble sleeping when the old "drain pain" I had on the R side mysteriously came back with deep breathing...what? Those drains are gone! So I've surmised it is a pulled intercostal muscle. Yay me. Hoping to get this thing worked out eventually...it's still bothering me intermittently even as I sit here.
Bayareamom - yay for the strawberries - YUM! I have gained 4# already since my surgery...people are dropping off terribly yummy food, and I can't work out to keep it off. So much for the lipo of my legs being a side benefit to my surgery...not if I keep blowing up like a balloon! I just can't seem to restrain myself from eating...feels like I "deserve" it after all the stress and pain...definitely feeling-sorry-for-myself binging...awareness is the first step...LOL!
Sarah - you nailed it - definitely feeling "weary" of it all and ready to feel "normal" again! At some point the ‘ol patience with recovery starts to wear thin! Thanks so much for the encouragement!!! And regarding your hubby - I can relate. Mine has been amazing, but he too has had to go back to work and manage that on his brain while still thinking and worrying about me. I know we feel a loss of control b/c of all the physical things we can't do - but we still can make a difference by emotionally being there for our spouses - giving them that extra kiss, hug, reassuring them that we are fighters and will get through this. So glad you brought this up, b/c I'm gonna make an extra effort to be there for him. And yeah, of course I understand the chocolate covered almond outlet, LOL!
Yes, thank goodness we all have each other to commiserate with and hold each other up. This board is a great thing to wake up to and read, I'll tell ya. I feel better already!
Lorraine
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SAO must be the rain here bringing me down. I know it's going to take time but some days I really want to do things that cause me to feel so limited and incapable. I want to get back to work and be busy with life again. Shopping - driving - and showering are actually work right now, and takes me double the time, so I guess I am just feeling sorry for myself for lack of independence.
dancetrancer I have to wait until the 11th of this month for the PT and help with movement. My BS says I have more healing to do right now and yes @ the Yippee. I am working on the itsy bitsy spider crawl up the wall right now - driving with my left hand and my family laughs @ my hugs. I sure hope we can wave @ each other soon, without having the noticable after effects. LOL Feel better.
exbroxgirl I'm thinking about you as well as how your feeling. I guess we all know what each other's going through and feeling bad for one another. Hopes and Hugs things level out and you feel better soon. Don't you love those OW! moments when you move it the wrong way or too high when you forget in that moment there's this little issue you have with the arm. LOL I reached for something in the store the other day and the pain struck and I started to grab my breast area when I remembered I was in a public setting and there were people in close vicinity. My kids started busting up due to our little secret. LOL
Caryn it is a pain when the medical profession can get so upclose and personal by removing our breasts and then can't remember our names. LOL. Not laughing @ your circumstance but rather the situation that creates our fears of future treatments. Thank goodness the Doctor's are more aware than their support systems. It is sooo OKAY for you to call your Doctor's office and let them know how you feel and how their caller made you feel. If the Doctor doesn't know what's going on he or she can't fix it. I'd be scared too, if I had issues pending where the caller didn't have a clue as to my present state of affairs, and wanted me to place any trust their future care. I just know that the hands on care will be much more professional than the ditz that telephoned you. So far as your being scared goes all I can say is you have a right to feel that way with everything you've gone through all ready. I think we all get gun shy. Our fears our always worse than the reality of any situation, but it's healthy when it involves any attack on our bodies. I don't think our bodies recognize the difference between a surgery or battering. You hang in there and feel better. Do something good for yourself and change your thought patterns to something you enjoy rather than what's pending medically. It helps to balance the fears out. Keeping you in my thoughts and prayers.
Thanks for your thoughts Odie. Really appreciated. Hoping things are good for you as well.
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DT,
I say enjoy all the chocolate, strawberries and food now while you need it. You will work it off in no time once you are 100%, and besides, Dr. K can always take care of it with his magic lipo wand later if necessary!
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LOL rk, I'm not so sure it's a good idea to encourage me on this one...chomping down on carrot cake as we speak, LOL!!!! Ha, ha, ha, ha!
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