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  • ref
    ref Member Posts: 121
    edited January 2012

    Today I was detached from everything except one drain. Took a shower which felt great. Did 4 laps. Still have some itching so I take Benedryl which makes me very tired but less itchy. Worth it! So back to a nap for me.

  • bdavis
    bdavis Member Posts: 3,192
    edited January 2012

    I am going through a low point right now... For the past year I was "in treatment"...just had surgery, about to have surgery, in chemo or something... Now I am well past surgery (almost 2 months) nothing planned for the future, don't want to schedule tats til I know I am done with surgery... so I feel in limbo... PLUS not feeling so good now that I am 3 weeks into Tamoxifen... achy and moody, dry eyes. For those of you who are through stage II and not sure what came next, did you feel this way?? Its that out of the cocoon feeling... and I am not liking it. I am farily certain I will need a stage IIb, as my left breast is still quite firm, and I have a couple of other firm areas... I was so hoping these areas would have been resolved at stage II.. plus the belly bloat... ugh.

  • besa
    besa Member Posts: 289
    edited January 2012

    Ref and SurfaGirl- Good to hear you both are on the other side and doing well!  Rest up and heal.

  • besa
    besa Member Posts: 289
    edited January 2012

    bdavis- What all of us has been through is huge.  When I was diagnosed my internist told me that it is very common for women to "hold it together" while they are going through treatment (because essentially you have to) and then when treatment is over or at least when things calm down they start to feel sad or anxious.  The tamoxifen may be part of this or it may not.    I think what you are feeling is very normal.   We are not back to "normal" - it will take time.

  • KBodie
    KBodie Member Posts: 211
    edited January 2012

    Betsy I feel ya. Today I was feeling overly critical of how things are, wondering do I go again? Do i just move on? Don't feel like someone who is back to normal by any means. And have also felt funky since tuesday, spotted a little yesterday and wondered how is it possible I am having period-like symptoms with no ovaries, tubes, or uterus? So then I started worrying it was some kind of menopause onset and I hadn't had any symptoms like they said I would within a week or two. So I called and they said I could have "periods" for up to six months. Our bodies are so weird. A period without a uterus? Or symptoms of it anyway? That seems to have passed but I still feel obsessed with my body and its flaws and just need to get off restriction and on to life. Plus, my kids are still home on break and it is wearing me down!



    Best wishes to those of you in NOLA. Can't believe how far away it feels from there.

  • bdavis
    bdavis Member Posts: 3,192
    edited January 2012

    Thanks Ladies... Its sort of weird, but I am envious of those in NOLA getting tweaked and fixed... odd thing to envy I'd say. And if someone had said that to me, I would think them crazy... so maybe that's it.. I am going crazy. I think when your body is not quite right, and yet you don't have a plan to fix it, it is a little disconcerting. I am a planner and I don't have a plan. I am though confident that if I need my breasts revised, I can get that done, but what concerns me is that I have the breast hardness STILL, and I worry that it isn't just swelling as Dr D said, but necrosis, and if he were to remove it, I would lose half the breast, and then what?? Secondly, I am concerned about the bloat... If I knew FOR SURE it would subside in x number of months, I would relax, but there are no guarantees it will... In the meantime, I feel somewhat pregnant.

    Regardless, I am thinking of you ladies down south there... heal fast!!!

  • toomuch
    toomuch Member Posts: 254
    edited January 2012

    Betsy - I hate to say this but is it possible that the firmness in your breast is secondary to LE? I know surgeons like to say breast swelling but I definitively have LE in my left breast. It has taken longer to soften then my left. Dr. S told me that the swelling could take 2 years to go away. My LE therapist thinks it's more likely that I'll have it forever. I have to say that 11 weeks post stage 2 my left breast is jiggly inspite of the LE.  Anyway, you may want to make an appointment with an LE therapist or oncologic PT to have it checked out. Swelling or LE, the massage that they do will help reduce it.

    DJ, Ref and Surgagirl - Sending you healing thoughts.

    KBodie - That is so wierd about periods. If you don't have a uterus where would the blood come from?

  • bdavis
    bdavis Member Posts: 3,192
    edited January 2012

    Amy.. I am five plus months post stage I and 2 months post stage II... the left breast has consstently been firm.. and Dr D says its swelling... hmmm.. Not sure. But I have never had any other signs of LE, and I was under the impression from Jen, the LE feels heavy. Its definitely in teh flap and not in the armpit where most of my nodes are...How do you fnd a ONC PT or LE therapist? And does insurance cover that?

  • Del11
    Del11 Member Posts: 398
    edited January 2012

    Betsy: have you tried manual lymph drainage massage? It might help with your ab swelling. I've had it at various points in my recovery and it feels great to get the excess fluids and toxins out, even temporarily.

  • ref
    ref Member Posts: 121
    edited January 2012

    I met two amazing women today, DJ and Surfa. After dinner, I stopped by both of their rooms. They both look fantastic! We all seem to share being exhausted and itching, but otherwise doing very well. I had a great talk with both of them and also met their lovely families. We plan on doing our laps together tomorrow, assuming we can all stay awake!

  • tigsun
    tigsun Member Posts: 162
    edited January 2012

    betsy there was a book i read back in 2000 that addressed the feelings we have after treatment when nothing is scheduled on the horizon.  i will look around and see if istill have it to tell you the name.  it is a normal reaction.

     after stage one the physical therapist told me since my the regular way the lymph node drains is forever changed because the lymph node chain was disrupted that i should help move the lymph flow around.  i do it every day in the shower.move my hands down along the belly and move them apart (right to right side and left to left side) in movements the direct the flow around my diep scar line. not sure if that could help with your swelling. i never had swelling but i do it daily just because that is what she suggested.

     i tried to google massage after lymph chain broken and some things came up for manual lymphatic drainage.  not sure that is what i am doing but it sounds like it.  i dont recall what she called it exactly but i do it daily.

    Manual Lymphatic Drainage

    This treatment is far more pleasant than it sounds. Manual Lymphatic Drainage (MLD) helps to rid the body of toxins and excess lymph, by stimulating the body's lymphatic system using specific massage techniques.

    The lymphatic system is a vital part of our immune system. Part of its function is to drain, transport, filter and remove broken down foreign substances and waste from our tissue.

    This gentle, rhythmical, precise, massage-like technique gently moves lymph towards the lymph nodes, where the body can dispose of the waste more easily. The technique is also effective in releasing blockages of lymph flow, which can cause oedema (swelling of the tissues).
    Other benefits of the treatment are said to include clearer skin, a better immune system and boosted vitality.

    ok i am going to try to post a link to a picture with the lymph node chains so you can see what is disrupted.

     http://cancerhelp.cancerresearchuk.org/prod_consump/groups/cr_common/@cah/@gen/documents/image/crukmig_1000img-12158.jpg

  • tigsun
    tigsun Member Posts: 162
    edited January 2012

    ok slow me i am just seeing jeskachi's post.  i think this is what i do.

    ref isn't it great having others around at the same time.  i could never do laps with others because i couldnt really walk for stage 1.  stage 2 i could though.  it was nice to have a bunch at the hospital with me for stage 1 and visiting.  stage two i had one surgery buddy.  stage 1 there were 5 us of there at the same time.

  • ref
    ref Member Posts: 121
    edited January 2012

    Tigsun - it is great to have surgery buddies. We just talked in our rooms but I'm hoping we will all be up for some laps together tomorrow.



    Betsy - you've been through a lot and you think you have more to do, so you feel unsettled. It's completely understandable. Massage therapy could be a good way for you to address the areas that bother you before you can deal with it surgically. It's tough to wait but it helps to see where the changes start to stabilize over time.

  • toomuch
    toomuch Member Posts: 254
    edited January 2012

    TIg and Ref - You both sound amazing!!!

    Betsy - What Tig said. Mastectomy alone can intefere with lymphatic flow. Then again, it may just be swelling but either way manual lymph drainage should speed up the resolution. My insurance, pays for my LE therapy. But then again, I have LE : (. At the very least, I'm sure that yours will pay for an evaluation and for sure it pays for post mastectomy PT for ROM. and probably scar release. You need a doc to order it. My regular ob/gyn gave me the Rx for my initial evaluation because my BS denied that LE was a possibility. After each of my surgeries, I got Rx's at my post-op visits in NOLA because you need a new order after every surgery. Why don't you give them a call.

    Here is a link to a great website about LE. It includes resources on how to find a trained LE therapist.

    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    I hope this helps.

    Amy

  • Momma2four
    Momma2four Member Posts: 133
    edited January 2012

    Betsy...totally normal.  I remember when i finished all treatments(10 yrs ago:)....i thought.  Now what??   I was er/pr- so i couldn't do tamoxifin.  It was hard.  My onc put me on a antidepressant which did help.  Please know it does get better.  Hugs to you!!

    Michelle

  • celtic_antique
    celtic_antique Member Posts: 351
    edited January 2012

    Betsy -- hear you. I, too, know I will need at least one more adjustment before tats (did I mention the nipple made for me is HUGE compared to my natural one and I am totally obsessing about it!?), and, in its own way, that is a "plan" of sorts though very open-ended. I am haviing a really hard time feeling motivated to get back to the life before cancer -- just seems easier to float along until something else needs done. Then again, I hate ambiguity, so am not really good at "going with the flow." I think it is a really good thing that the house is full of workmen right now and our bed and breakfast conversion is demanding more than ever. Decisions each day. And I will be going back to work mid-week next week though I have little interest at all in that work any more, it seems. I purposefully scheduled a mini-vaca in FL in early Feb for 10 days and hope that the change-up in scenery, being away from the chaos in the house, and the healing process will somehow all converge and push me into the positive zone again. If not, I have my counselor on speed dial. 

  • louis13
    louis13 Member Posts: 195
    edited January 2012

    Congrats to the ladies doing their laps today!

     Betsy :^( i am home alone all weekend and i could do with a chat if you got time on your way home before cooking dinner??? and you do have a plan....and it is a good one...which is that you need to wait and see and let things settle so you know what you are dealing with- and then go back if necessary- think you especially had a lot of surgeries in short period- so i dont think your body ever got a chance to recover and unswell and deal with the assault of surgery? i really do think that is big disadvantage and impediment to overall healing process- as for tamoxifen- i dont like it one bit and am going to make my onc really do the maths for me next visit. got depressed the other night reading the other tamox board( defunct now i think) reading about recurrences on tamox etc- people with no node involvement- who did all the right treatment etc etc and yet cancer came back- am always struck by how so much is random- all the stats etc we quote are just a general guide- means nothing if you are not in that %-  anyway- what i am finding post my reconstruction is that my brain is increasingly turning towards embracing how to live in the "future" with this 'history' of having had cancer now- bit scary cos really when you are doing all the treatment you are dealing with cancer- now comes living with it- or rather hopefully without it ever again- think the recon surgery part of the breast cancer journey is almost like a 'time-out' on remembering you have/had cancer because of its focus on building new breasts lipo etc- that has been my reality check of late- sorry about the keyboard on this computer guys very restrictive- no commas!

  • louis13
    louis13 Member Posts: 195
    edited January 2012
    so I am wondering what have others who have had MX in NOLA do with regards to followup with a BS and getting mammagrams etc? my BS here is not talking to me after my defection to NOLA - so go to my OB?GYN? I need to get a PCP too- only just moved to NYC when i was diagnosed and I dont have one! 
    Dana- do you know of a good one in my area since you used to live here? also- when are you coming over this way? love to catch up
  • dbdaze
    dbdaze Member Posts: 139
    edited January 2012

    Thanks for the info on massage therapy -- I got a prescription from my primary but the therapist group she referred me to didn't accept my insurance.  I called around yesterday and found one!  Start twice a week to begin with, my choice.  

    Also the biopsy of the darkened sunspot on my scalp didn't appear abnormal but I have to wait til Monday for results.  Got to show off my new 3D nipple tats at the doctor's office -- everyone was truly impressed.  The knot under my armpit that I was persevatating about turned out just to be a muscle.  I kinda thought that and then kinda didn't.  Hate when your mind churns simple into complex!  

    DJ, Ref and SurfaGirl:  Hope you get those laps in today!  Glad to know you are all doing well.  Keep rested and recover soon!

     Betsy and Celtic: As already been said, depression is a normal reaction after surgery.  Celtic, you decision to plan a get away in February is fabulous.  I did the same and it made a world of difference!  Hugs to you both!

    What have folks to be the most helpful in helping to fade scars?   

  • bdavis
    bdavis Member Posts: 3,192
    edited January 2012

    Thanks Ladies for all of your input... I guess what is concerning to me about the swelling or bloat in the upper belly is that I did NOT have it after stage I, but only after stage II... I would have thought things would have improved after a stage II surgery... not sure if lipo caused a problem or what... I am back in compression today as it seems to help. I will try some of the massage and also maybe call NOLA for a script... but I will be on my own to find the therapist I think... I also have done a lot of exercising recently, which appaears to have made the bloat worse,.. as I have said, if this is a short term issue and will resolve I can live with it... but perhaps a plication is in my future... hope not.

    As for the breasts, I trust if they aren't perfect Dr D can fix those... although a bit concerned about hard spots... but after some massage last night, I actually think it may be better.

    Rosemary... I will definitely be around this weekend.

  • celtic_antique
    celtic_antique Member Posts: 351
    edited January 2012

    Plain old Vitamin E oil. My open heart surgery scar is almost non-existent through regular application of the oil as soon as possible once the glue disappeared. Also kept the incision fairly soft so when the scabs broke off, it just kept getting better. Thanks for your words of wisdom db ... I think Betsy and I are probably to of the least patient people in the world. And I DO plan to enjoy my hiatus in February. Thanks!

  • KBodie
    KBodie Member Posts: 211
    edited January 2012

    Betsy, I forget when your stage 2 was but I have a lot of swelling in lipo areas still, some spots are just hot to the touch. I researched it quite a bit and traditional lipo takes at least 12 weeks to finish swelling, healing, and smoothing out. There is a newer method that involves smaller cannulas and not stitching up the cannula sites where results are seen within a couple weeks but it appears that is not the method used on us. The amount of fluid juggling around on my upper arse is uncomfortable, noticeable, and painful. Did you have a lot of lipo done to the upper ab area? If a lot was done, it could be the trauma from that. You called a couple weeks ago right? What did they say? Call again, what the heck. They are there to put your worries at ease, right?

  • SurfaGrl
    SurfaGrl Member Posts: 107
    edited January 2012

    I met ref and Dj and we talked yesterday and was able to walk this afternoon. Ref flew

    back home today. I decided to stay one more night because the morphine had a huge toll on me.



    Kbodie:I

    I am pretty sure the doctors use the cannula method and other spin it. Suppose to increase chances of fat survival

    Celtic any particular brand of vitamin E? Is it a cream or pill? Been using kelocote but would love to see nonexistent scars

    Betsy did u Leo upper abdominal

  • bdavis
    bdavis Member Posts: 3,192
    edited January 2012

    kbodie... My stage II was Nov 14, so almost 2 months ago... and SURFA... I had some, but I don't think a lot... I am in compression today to see if it helps with bloat, and I have been massaging... I will say it is worse in the last couple of weeks, which coincides with less compression, more exercise and tamoxifen... I sent pictures about 1.5 weeks ago... Laura said she'd show Dr D on Tuesday the 3rd, but I haven't heard back from them.

  • celtic_antique
    celtic_antique Member Posts: 351
    edited January 2012

    Surfa -- I use Spring Valley E Skin Oil. Comes in small 2 oz bottles that last a long time, even with daily applications on multiple sites. Apply to the scar -- I usually use the end of my finger, but a Q-Tip would work well, too. My husband picks it up at, believe it or not, Wal-Mart!

  • Springtime
    Springtime Member Posts: 3,372
    edited January 2012

    Hi Ladies, I am back! 

    Congrats to these ladies below who just went through their procedures!

     

    Jan 4 - DJWeinstein - Stage 1 (Mx w Dr. Stolier). Hip Flaps with Dr. D and Dr. S. NOLA 

    Jan 4 - Ref - Stage 2b with Dr. S, NOLA. 

    Jan 5 - SurfaGirl - Stage 2, Dr. S., NOLA

    J 


    And these women are coming up next! Monday and Weds of next week. Nordy, I am totally interested to hear what Dr. S has to say. And Sandy, I am also interested to hear how you feel about the Vinnie tattoo after you get it done! Please share! 

     

    Jan 9 - Nordy - Consult with Dr. S., NOLA  

    Jan 11 - SandyInParadise - Tattoo redo with Vinnie 

    J

    Downey30, I added your date above, Betsy also PM'd it to me, so you were doubly covered! Thanks Betsy. Downey, there is nobody listed yet around your surgery, but it's still early. Let's hope someone shows up here! It is really nice to know women there and maybe meet up before, during, or after surgery. You feel so less "alone" and to me, that is the main reason I do this, because having "NOLA Sisters" totally rocks! 

    I met Trisha and Nordy out West! So lovely to see these gorgous women and their families while out there visiting our daughter. Friendships made here last! Nordy, I ate so many doughnuts from Voodoo I think I am still on a sugar high!! Back on the diet today! Have to loose those Voodoo pounds!! LOL!!! 

    Betsy, I had major bloat after stage 2 (I had plication) and it took months to reside. It does go down slowly, very slowly, I even contacted the center and took pics. Seems it just takes forever to subside. Oh I hated it and complained. I know how you feel. Try not to be discouraged. It will get better over time. By the time you stop focusing on it, you'll one day notice it's slightly better. Also, I took almost a year after my stage 2 to go in for stage 2b. I wanted to make sure it was important enough to me to undergo another surgery. It was in the end, and I'm glad I did it. I see teensy little things now, but fell very done and satisfied with the final results all over my body (because so much was involved! front, back, like you!) I would say enjoy the time of feeling better and get healthy and exercise and do all the things you can't when recovering from surgery. Hang in there! As others have said, its a lot we go through! Some period of feeling a bit out of sorts is totally normal. I think it is also worth going to an LE therapist to see if it could be LE. Just to rule it out. 

    DBDAZE - I read your blog, loved your entry! :)  So glad you have "cherries on top of your cupcakes" :) LOLOLOL!!!! 

    No place like home! :)

  • bdavis
    bdavis Member Posts: 3,192
    edited January 2012

    BEV... This thread just isn't the same with you away... glad you are back, and thank you for chiming in and reassuring me... curiously, is plication for lower or upper belly? I was under the impression it was for upper until today.

    NORDY/BEV... is that VooDoo Donuts?? Oh I love that place. We were in Portland last year and my son loved going there. And I guess I missed something... Nordy, what is your consult for?

  • besa
    besa Member Posts: 289
    edited January 2012

    I want to thank everyone.   I talked to the Center today and they will send me brown tape and medication for my scars.  If we  hadn't talked about this here I would have never known I was missing these things. 

  • VictoriaB
    VictoriaB Member Posts: 85
    edited January 2012

    HI Ladies,

    Back online after break! I am really scared and upset--I think my right flap failed. I am 9 weeks post-op hip flap surgery and the whole time the right breast has been bothering me. At first it was HUGE and uncomfortable, and now it has shrunk and it is HARD and uncomfortable. I have been sending pix to the center and they finally told me yesterday that Dr D thinks the flap failed. I can't believe this! I mean, I had two failed lumpectomies, and flew all the way down to NOLA so I didn't have to get a DIEP flap and now this? Can you all tell me what are the symptoms of flap failure? Cause the center said that it "might" soften up. I have a huge schedule this spring and I cannot take any more time off. The 10 days at NOLA was extremely hard to book and manage with my kids, etc. and I dunno if I want/or can do that again.

    How long do you wait to see if it softens up? My affected breast is warm, the same size (maybe even smaller now) as the other breast, but very very hard. What do you all think? What are your experiences with failed flaps? Thanks- 

  • Del11
    Del11 Member Posts: 398
    edited January 2012

    I waited 10 months to see if mine would soften up. It did, a little, but never as much as the other one. It was very firm (not "hard") and round and was uncomfortable when I exercised. But I still wanted to believe it would soften so I went ahead and had two stage 2 surgeries. After the second surgery the flap started obviously failing--the necrosis liquified and I lost 2/3 of the flap by the time I had it replaced.

    I've never heard of anyone else having liquefaction to the extent that I did, but I believe that when someone says their flap "softened" what's really happening is the necrosis is liquefying. Possibly being replaced by the body's fat? Dunno. But if your flap softens it will probably shrink some too.

    My advice would be to cut your losses. Ask the docs what is a reasonable time to wait, but start figuring out how you can have it replaced. I had to wait a few extra months to build up vacation time and savings before my second stage 1, but everything turned out fine. You can do it, if you have to. Fingers crossed that you don't.

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