Mastectomy Sept 2011
Comments
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jazz=I looked at the pics and I can say mine wasn't that bad. I thought it was gross enough though. That gauze band sounds kinda neat. I had a roll of gauze soaked in petroleum jelly that I had to cut and place every other day. I sure hope you're healing well now and on the road to recovery!
Babycakes=wow, out selling houses already. I haven't hardly been out of sweats or shorts since surgery. You're a warrior!
I have my big appt. w/hairdresser today. Donating my hair to Locks of Love, and getting a short cut. Short cuts are no big deal, but I have never had short hair. Ever. I'm ready to try it though. If I don't like it, it'll fall out anyway, so why not?
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Hey Tina - sorry to hear that sleep is no good - we all have such different issues and experiences, but this seems to be universal amongst us! I think that decreased activity doesn't help, either - if we could get out and take a brisk walk, at the least, we'd all sleep better. I know that when I'm normal, exericse has a HUGE impact on the quality of my sleep. Anyway. We will muddle through.
Lori - I think it's a lovely idea to donate your locks, and before I started chemo, I got my hair cut very short, too. It was a cute cut and it was SOOOO easy. Once I had my first infusion, I got my hairdresser to shave my head and to trim up my wig so that it looked more natural (less heavy and well, wiggy). I didn't want the experience of pulling clumps of hair out of my head - for me that seemed too hard. I sorta had a GI Jane look going for a couple of weeks 'til it started to come out, then it was looking patchy, so I took duct tape and used it like a lint roller on my head to get all the little bits off so I was smoooooth. Didn't hurt a bit and I loved the cleaner look. It's weird to be bald as a grownup, but you'll figure out what you're comfortable with (some of my friends never wore a wig, I wore mine when I wanted to pass for normal, otherwise, scarves and hats were more comfy - fleece hats w/soft seams inside were THE COZIEST for cold winter days). I found I needed at hat for sleeping - you lose so much heat out of your head and w/no insulation, I was chilly even in bed.
I feel better today than ever since surgery. Swelling is down this a.m. (not gone, down, but I'll take it!), I got an OK night's sleep and this a.m. I more fully participated in getting our daughter off to school than ever. It feels so good to be doing all the mundane things I did before BMX. Stuffing her thermos full of pasta for lunch, harassing her to get her shoes on . . . My visitor for today has cancelled b/c she is getting sick, so I might have the energy to start a book and will just read all day. To the point where it's not seeming like as much of a punishment to hang around all day - more of a decadent treat. I think this is what they call . . . progress.
xo to all.
Sarah
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Sarah=duct tape. funny, but such a good idea. I know when my DD's hair fell out, it was like tumbleweeds all over the house. this will be much easier to deal with. glad that you're doing well. sounds like you've come a long way sister!
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Oh right, Lori, I keep forgetting that unfortunately, you have experience w/this through your daughter. Well, at least the duct tape idea is novel.
xo
Sarah
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Good morning all.
Off to get my chest x-ray today and a well needed haircut. Like you Lori, I have always had long hair however it is extremely long now since I have not cut it since my diagnosis back in June! I originally was going to try something totally different if I had to have chemo but now plan to try a new style just nothing wild.... Finally feels like I can now start getting back to some semblence of normal which is welcome even if mudane...
Sarah - I am so happy you are also finding some comfort in the old routine and are able to enjoy the downtime instead of feeling crappy.
Babycakes - Keep on selling those houses!
Jazz - I am so glad you found something to provide support and give you more comfort. Progress is progress!
Tina - Glad the pt is helping and hope you can do something for yourself today while out & about for your pt appt.
Guess I best get dressed and moving for the day. Keep the good news coming ladies but don't forget to chime in if you need a shoulder. We may all be at new norms but we are in this together!!!
Hugs!!!
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Hi all-
Popping in to say I'm glad to see everyone is doing well. My recovery is going smoothly from the mastectomy on 9/16 and I have my second fill on my TE later this week. Going well so far.
Margie-Great news on your pathology report!!!
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Back at work this morning. My passwords didn't work and IT person told me to email him a work request.....okay but I can't get into my email. So frustrating since the office is all set up with EMR - can't do anything if I don't have access.
It is weird that my boss never said "glad to have to back, hope you're feeling better....." not even a hello!
My co-workers and patients are glad I am here- that's all that matters0 -
Groovy girls - wow, what an insensitive boss! I am glad your co-workers and patients are glad you are back!
Had another great night of benadryl-enhanced sleep. Feel wonderful this morning!
Hope everyone has a great day.
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Good morning all! I have had shower and shampoo, and am feeling closer to human today.
Margie, I am VERY happy for your path report, and SOOO jealous that you have already had drains out and your surgery was a day later than mine..... I am still draining about 30-40 cc/day.... maybe I am too active? Oh, well, my turn will come! At least the rash is getting better, the energy is better than I thought it would be, and doing ANYTHING normal feels great!
Lori, I think donating your locks is a great idea! And I love the duct tape plan! When I started chemo last fall my neighbor did a buzz cut for me - she does her husband's and sons' cuts - we had a party with my mom, neighbor, and prayer partner, and my DH was the photographer for the event. Even that short, it still came out in clumps in the shower, so the duct tape might have been helpful. I also found soft fleece to be warm and comfortable. My scalp got very tender when I was bald, so found a good body lotion (Keri or something like that) was soothing, also used aloe with lidocaine for sunburns on occasion. I wore the wig to work to look as normal as possible, but at home I went bare or soft scarf for warmth. I also discovered that the buzz cut was so easy to take care of, am considering going back to it as my newly growing mop is very thick, very unruly, and won't do a thing I want it to do!
Babycakes, glad you are selling houses. We have been contemplating putting ours on the market for over a year, but with the aggravations and inconveniences of fighting cancer, it was just not the right time, but I am hoping we can do that soon. I really want to downsize sooner rather than later.
Groovygirls, I take it that you work in a medical office - EMRs are great in a lot of ways, but there are a few problems with them. I don't have to deal with them, but do have to work with password changes every 3 months, so I am continually forgetting the new one.
Sarah, glad to hear you are making ..."progress"! Enjoy a little break today if you can.
Well, my mother has been here just over a week, has taken over my kitchen, is now in the process of rearranging my cabinets, which I had JUST gotten organized to suit the way I work in the kitchen, the way I cook, etc. She is off to find some sliding shelves, which may be helpful. I love her, but am looking forward to getting my kitchen back!
Tina, I am with you on getting the arms back. I am just DYING to get some good stretching in, feels like what little muscle I have is disappearing little by little every day, but the NP yesterday reminded me to not reach overhead for ANYTHING, and etc etc etc blah blah blah..... said I will see PT on my first scheduled post-op on the 21st. Argghh... I told her she was making me crazy and she just laughed. (She is a breast cancer survivor, and I know she knows what she is talking about, has been a great help to have her on my team.)
OK, I have 4 projects I need to work on, need to finish 2 of them today. Sending lots of gentle hugs to you all.
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Linda-- I still have 2 drains and are putting out 40-50ml each ( they have to be down to 25 ml each to be removed). The 2 he removed had never really put out much. I have a feeling the 2 I still have will be around for a while. I am active - walking about 1 mile per day I am not yet reaching over my head or raising my arm above shoulder since the dr said not to but geeze I want to move to next step. My PS told me yesterday I don't have to be first at everything
Hoping tomorrow the BS will order physical therapy for me.
Lori-- donating your hair is wonderful. I did the same last May before I started Chemo. It feels good doing something to help others.0 -
Drains... The great mystery of mastectomy! In reading everyone's experiences and reading questions by those in waiting who are trying to figure out how long they will have them, I can only shrug. I had only one drain on each side and had very little output once I got home from the hospital. I did walk quite a bit from the moment I got out bed, even in hospital. So, go figure.
Anyway, having surgery to remove left nipple and probably implant on Thursday and port placement as well. Wig shopping tomorrow. The fun never ends!
Caryn
PS: does this make me a September or October surgery gal?0 -
Caryn- you will always be part of our group! Good luck with the implants. I am liking mine more and more every day!
I am a family nurse practitioner and I provide primary care to the homeless in the next town. I had one patient come in every day to ask how I was. I got tons of phone calls and emails today from them just checking in to make sure I was okay. They mean so much to me (heart). Screw the management!0 -
Sarah- is your appointment today? Fingers and toes crossed for you!
It is another amazing day in New Hampshire- the dog is spinning around getting excited for her walk!0 -
Groovy girls- enjoy your walk with the dog. Today it has been raining since 8am here in NC so probably no walk for me today
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Clarification- right side, one-step implant is staying. Left side will probably have to go because ps is not sure there will be enough skin left after nipple removal. In that case, I will have a te placed and then have to do fills. Not many I hope since I am not going big. Caryn
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Hi Ladies.
Good to hear how people are progressing!! Sorry to hear of those who are struggling. May tomorrow be a better day.
I saw my ps yesterday, and fortunately he was not worried about the little line of black tissue (almost like a scab) around my right nipple. What a relief! At this point, it doesn't look as if I'll lose that nipple (fingers crossed, though, since we never know). He is worried, though, about the incision on that breast. It has been a bit odd since the surgery--it's much thicker than the incision on the left breast. The ps said he wants to watch it for another week to 10 days and hold off on doing the first fill. That's fine with me. I'd rather be really ready than have the fill too early and have problems.
The lumps and dents and weird shapes in my breasts are, apparently, the way it goes right now with the TEs. Yuck. I really do look like Aunt Mabel from Florida in my cami with my lumps-that-sorta-approximate-breasts. Sigh. Thank goodness it's fall so I can wear the few button up blouses I have, although it's supposed to be in the 80s ad 90s in so cal over the next few days. The doc said I could try driving around the neighborhood on Thursday (three weeks post op)! I'm so excited. I have major cabin fever. He wants me to start mild stretching ("walking" my hands up the wall, three times a day for three minutes).
As I read over everyone's posts I notice how we've moving in a sort of wave. Although it's not exact, first we were worried about and struggling over those stupid drains, then walking and constipation and the after effects of anesthesia, and now a lot of us are having sleep issues. Even though we all move at our individual speeds, I think this means we're moving forward. Margie, it was so smart to start a September group! It brings me such comfort to be traveling this path with you all. Gentle hugs to all! xoxo, Stephanie0 -
Hi friends - checking in here while I munch a giant bowl of black beans w/a little olive oil, nutritional yeast and some Bragg's aminos . . . I will've eaten an entire can of black beans today. Making up for lost protein & fiber, I guess?
Caryn, I think you're part of both groups - why the heck not!? After all, surgery in both months. Don't leave us . . . please?
Groovygirls - appt. is tomorrow - are your fingers and toes cramping up yet? Thanks for the good wishes. I think this is going to be fine - that's what my gut's saying FWIW. It'll be what it'll be, and my worrying won't do anything to change it. I can't believe your mgt.'s insensitivity, but am happy for you that at least the patients appreciate you being back. It is just so odd how some react to all this - both good and bad. Folks you never thought would be supportive, helpful and kind step up and become new fixtures in your life and those that you'd imagine to have been terrific in your time of need fade away. Such an interesting interplay of everyone's own stuff w/your stuff. It's so hard on us, but then can be so good. Another roller coaster of cancer.
Colodisneylover - glad to hear you're doing well!
Linda - rash, rash, go away . . . and I hear you on kitchen control. I am an avid home cook (with a cooking blog, no less) and am chomping at the bit to get back in the kitchen. It is a therapeutic place for me, and yet it's off limits (like hugs, bah!). I hope that the sliding shelves are good - we have them and I LOVE them. You can change everything else back to where you want it when your mom leaves. For now, sit back and enjoy the pudding!
I'm thinking I might drag my daughter around the block w/me again this afternoon. This weather's too good to not do a twofer on the walk today (a first) and we have rain coming which I realize will cramp my walking style . . . not used to this - normally I head into the gym or down to the basement. Have thought about walking laps in the basement, but seems a little pathetic. I'm done with pathetic.
Sarah
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Sarah- I think the chemo look must be in now as I see a lot of Hip Hoppers in the Malls here wearing the bandana's tied back with a hat on top. I laugh to myself and think whose going to notice in this day and age. Maybe get a few piercings here and paint my eyes real black with purple lipstick. I'll fit right in with the youth of today. Kinda Hip Hop Gothic fusion. LOL. My son roared about the Duct Tape. He always remarks, "You can use Duct Tape for anything Mom", but says this one he's got to share with his racing buddies. (Races cars)Their so good with graphics on the cars I want to ask him to do something for the BC awareness. I doubt very much they'll do a pink graphic but they can come up with something great.
Linda- I am in your corner with the kitchen issue. I have loving family as well and after spending two weeks, knowing what was coming, and arranging my kitchen to be able to reach everything and organize things so they were workable, my peeps came and helped me organize. Sweeeet. Now I spend my morning trying to find the items I need to deal with the norm for food. thinking of ordering premade foods and thankful my microwave can't be moved. LOL. Love your attitude and your strengths. So helpful on bad days.
Caryn- I am so happy for you. I mean it. This experience is not easy for any of us and just because your healing is going well, doesn't mean you haven't been through the battle. Glad to hear your wig is pending. I think age and genetics as well physical and mental health, and BS's, has a lot to do with the variety of circumstances we all share here. Get out and enjoy the day. Hugz and Hopez.
Groovygirls- I'm GLAD your back at work! I know what it takes to get started again. Take it easy on yourself and take it a step at a time. It will all work out. A Big Rasberry to your boss and his bad attitude. We'll hope he or she comes around. If it's a she, shame on her. You have a great day and I hope good things happen to place those little stepping stones ahead of you to make things easier and easier.
Margie, enjoyed hearing that things are looking up. I laughed @ your punny, " A load off my chest" , whether or not you meant it that way or not. Waiting to exhale and then being able to is such a relief. Hope your day is relaxing and enjoyable.
Odie- Your cheerfulness was so obvious and it made me feel good just reading it. You get out there among the living girl, and have a great day.
StJude (lori)- I'm sad you went through this and hope you've healed from it. Yes, the daily routine of debreing and packing the wound is quite a bit of time out of my routine. I have an enzyme ointment that has to be placed in the wound under the gauze. It's a burn victims medication that removes the daily necrotic tissue and they now use it for BC recovery as it heals our tissues quicker so chemo isn't put off so long. I really didn't mean to distress anyone with the pics but they were all I had to share. Couldn't find others that showed the problem as well. Mine isn't as bad as the ones shown and I couldn't see the black tissue. The BS knew the tissue was dead and acted on it the day I went in. They love shocking my system. I get home from these sudden changes and spend two days figuring out "what the hey."!
The tube top of gauze does help, and the swelling is so much better today than even yesterday, though I think my healing is going better as well. Locks of Love is a great program and you'll feel like even though your giving your hair up it's going to a wonderful cause. You will make someone else so happy in the near future. Short hair is proving to be so much easier for me than my long hair was. Cooler too. God Bless and Hugs
babycakes- Hope things went well with the Doctor and your news is good. I know you have things pending but am hoping nothing is added to those issues. Hugs
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Busy day here for us girls - I leave for a few hours and I have lots to read when I get back!
That for sure is a good sign though that we all have lots to report! I have to echo Stephanie's note about this group and checking on our progress and cheering for each other and cheering each other UP! I went to PT today and was telling her about this group and how we all compare our notes and help counsel each other where we can and encourage - it's just so invaluable.So PT appt - amazing how that took almost my entire day - but there it is. First off - LOVE her... she is awesome - she is THRILLED I am coming to see her on week 3 post op - she said she doesn't usually get people that early - so even though we didn't DO much today - she said by six weeks I am gonna be doing GREAT.... it seems like a long way away in some respects and in other ways I think - LADY you crazy - I can barely lift my left arm - how you gonna DO THIS?
But she's great and did measurements of my current range as our starting point - gave me several exercises (not much for the left yet - but she doesn't want to do any damage to the healing of all that going on over there). She said deep breathing is GREAT... Gave me stuff to read about lympedema (sp?) said that I am low risk for it - but still need to know limits. Although she did say that usually shows up 2 years POST surgery - I said WHAT? Maybe I knew that and I forgot? I know people who got it pretty dang quick maybe she meant UP TO TWO years after surgery?
So I got naked for her- as I must do in every office it seems these days (waist up of course) - but ya know what -- it was NICE to have a new opinion look at everything (knowing she has seen quite a few) and say - things look good - everything is healing nicely... I got comfort from that. I know my PS is really the one to ask - but usually he is running in and out of the office so fast - I wonder if he even looks!! And I can't tell what things should really look like - so I was glad I took the top off for this nice lady.
Anyway - I am glad I pushed for PT - because it makes me feel like even though I can't do MUCH yet with my arms - I am going to do SOMETHING - and what I do will be the right things.
So I am TIRED and encouraged a bit today- also got my period - so hoping some of my sleeplessness and discomfort was also PMS --- Sarah - maybe I am with you on the UPSWING
Love you girls!
Tina
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Groovy girls- enjoy your walk with the dog. Today it has been raining since 8am here in NC so probably no walk for me today
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OK, can't stay away - waiting for my DD to get home so might as well sit in here and check the boards, right?
Jazz - glad your son got a laugh. That story of mine has provided a lot of laughs - great cocktail party story. Feel free to use and repeat! I keep thinking and not writing about your necrosis - looked at that site, have seen in in person. It is shocking and it is painful and takes SO much time to deal with. I hope it heals up as quickly as possible and doesn't derail you too long. What a complete bummer. It's great the swelling's down - that is PROGRESS.
Tina - SO psyched for you that you like the PT! I PM'd you on FB, but will say here too that I am going to my special lymphedema PT on Monday at 9:30. Like you, I won't be able to do much, but having someone who's knowledgeable and caring on the scene is a comfort, nonetheless. I hope you are on the upswing - afraid we shouldn't talk about it 'cause we might jinx it!
OK, my little love is likely running home to me now . . . unfortunately accompanied by one of THE CRAZIEST mothers at school, whom I haven't seen since the BMX. Will literallly have to kick her off my doorstep in a few minutes. As much of a talker as I am, this woman WILL NOT STOP. She is famous around town. Infamous, really. Wish me luck.
Sarah
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Caryn definitely the Sept group! Bummer that you have to lose the implant and go through the TE process on top of losing the nipple. We will rally with you for this next surgery!
Stephanie - great news about the nipple! I know that had to be a HUGE relief - it sure was for me. Fingers crossed that all continues well with that and also with the incision line. And yay for driving soon! I also like your description of our progress going in waves. We are all moving forward, bit by bit, and at slightly different speeds, but forward we go!
Sarah - I really can relate to how this process has opened my eyes to others based upon how they have reacted to this. A few people I thought would be most worried about me have backed away - and that hurt - but now others have stepped up so strong beside me - and I've been surprised at who those people are...it's really shown me who I can really count on to be there for me when the chips fall. Oh and good luck dealing with the crazy mother on your doorstep. If we don't hear back from you soon, should we call in the calvary? LOL
Linda, I'd be going nuts if someone rearranged my kitchen...however, if I got some free slider type of cabinets I'd mellow out about it, LOL.
Jazz, sounds like you are handling the wound care very well! So glad the swelling is improving, it does sound like your healing is progressing - yay!
Tina - so glad you love your PT!!! How reassuring to know you are in good hands. It's amazing how much progress can be made with the right therapist. And yes, having someone else who sees this all the time give you their opinion is invaluable. As PT's we get to spend so much more time with our patients than doc's, which is a real bonus of the job. I'm so glad you like her and that she is representing my profession well.
Margie, it's been raining all day here, too - miserable and cold. Feels like a good day to snuggle up on the couch with a blanket and my kitty cat.
Good news also today - UAB finally received my slides, so I will getting that second opinion and hopefully some closure soon! 0 -
Oh sorry Caryn- missed that part about the implants. That sucks...
Has anyone else gotten bills from their insurance company? Hope this is not an off-limits topic but.
For the one day surgery the total mount billed was $82164.05. YIKES!!! I guess we have really good insurance because we owe $0.0 -
Groovy girls, no, it doesn't suck, really. I will still have my right implant intact but more importantly , I will have the dcis behind my left nipple gone. To let it remain would suck!
Caryn0 -
Caryn - I totally like the attitude - I have the same feeling as I wait to get a second opinion on my retroareolar tissue (and close posterior margin). If my partial areola has to go, then GO! I don't want to take ANY chances!
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Groovygirls - funny you should mention the insurance co. - a few things came in today and I haven't opened them yet, but I'm curious to see what the total cost of my 3 days of pleasure at MGH ran the company. Because I'd satisfied my deductible (the only one in the family!), my total cost is supposed to be $0 too. I don't think this is OT, really, insurance can be a HUGE part of this whole ordeal. I know many women who've had to battle to get the surgery they want, to get particular things reimbursed, it can be a nightmare. Glad you're at $0 for sure!!
Dancetrancer - good PTs are a Godsend. Our "regular" PT has saved my and my husband's you-know-what many a time - he is a former Olympian and has the most unbelievable intuition and touch. Could NOT have gotten through my arthritis flare (2 years of it) without him. Just not for breasts, though - for that, the breast PT. So . . . did you snuggle w/your cat today? Hope it was relaxing.
Caryn, I love your attitude. Way to reframe the situation, girl! You too, DT - it can be hard, but my attitude has always been that bottom line, I want to be cancer-free. There are many ways to skin a cat (sorry, I actually like cats, too) . . . I'm scrappy and resourceful, but that won't work if I'm 6 feet under. So here I am, above ground w/saline sacks in my chest!
Sarah
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Sarah - so glad you have had a good experience, too!
And yes, we all have different areas of specialization. A close colleague of mine is a LE PT. I watched her do some amazing things in the clinic, and she has been a great resource to me now, answering all my nagging BC questions, LOL. I tried to snuggle with my cat, but for some reason she wasn't interested today...she's a very fickle cat (aren't they all?). Still, I knocked out for a glorious nap for about an hour. And guess what woke me up? The CAT! Meowing for no. good. reason. I keep telling her she is VERY lucky we are cat lovers...I don't know who else would tolerate her!
Here's to staying above ground for a LONG, LONG time!!!
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Talking about cats. Somehow I ended up with 3 of them. Had 2 then DD came home from university with the 3 rd one. At least she got her fixed and declawed before she told us about her. Guess who does all the cleaning up of litter boxes. UGG. but do have fun with them!!
Chemo starts for me oct 19 . (wondering if ill have to avoid those litter boxes now) I'll have to ask at chemo class. I can hope. There has to be a positive. 0 -
Diana my hubby feeds the cat, I get the litter box. I don't know why he always gets the front end and I get the back. I think you should get a reprieve from the back end while on chemo! 0
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Just checking in before giving in to the Tylenol PM.....
Caryn - I vote you stay on this board and join the other if you want as well. I hate that you have to go thru another surgery but am glad you were able to maximize it to get everything done at once. Love the attitude and commend you on your strength.
Jazz - I am glad my cheerfulness could infect others without being obnoxious. As MargieC said, it was a load off my chest. More like an elephant really......
Linda - On the kitchen cabinets issue, let me say I have felt youe pain. A couple years ago I went on a girls retreat weekend and my DH got bored (clearly not enough on the honey do list) so he took it upon himself to reorganize my entire kitchen pantry & all. Nothing like having to search all over your own kitchen. Don't worry though, you can spend hours putting it back when she leaves...lol
Sarah - Glad to hear you had a good day and hope you have made it back in by now....
Groovygirls - I am sooo curious how much my hospital accommodations and surgery cost as well. I don't expect any additional co-pay on my part and estimated it to be in the $75-$100K range.... Clearly I went into the wrong profession....
Tina - SO glad you have a great therapist (pt) and understand how good reassurance feels at this point. Continue making strides girl!
Everyone else, carry on with the healing process. Sweet dreams (medicated or not) to all.
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