DIEP 2013

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  • nihahi
    nihahi Member Posts: 3,841
    edited October 2013

    pattysmiles....It is important to cough and do the inspirometer stuff. You have been under anesthesia for a long time, and are relatively inactive now. I found the pillow to be useless...it was too bulky, it was too soft, I didn't have the strength or "mobility" in my arms to hold it firmly enough. I found holding a folded towel, or just my own arms against my tummy to work much better. 

    Do NOT get me started on the "bedazzled bra".....or Komen!!!!!Undecided

  • hrf
    hrf Member Posts: 3,225
    edited October 2013

    Nihahi, thank you for all your work on this thread. You have done so much for so many of us.



    Lahela, so sorry you have this new issue. And terrible for you to go through that pain. Hoping things get resolved quickly.



    I see PS tomorrow. Here I am 7 weeks out and still have healing problems. I'm hoping she will see some improvement and give more time. I really am not ready to do a revision (stage 2) so soon.

  • nihahi
    nihahi Member Posts: 3,841
    edited October 2013

    kuka...I missed your earlier post. That sounds just wonderful!!!!! So glad it seems to be a good fit for you! Enjoy your "new life"!

  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited October 2013

    Kuka, I'm so glad you like the job!

  • sweetpickle
    sweetpickle Member Posts: 749
    edited October 2013

    Yay Kuka! So happy that the job has worked out for you. I used to love getting up and going into the office, it was my grown up time after many years home with the kiddos!



    Do any of you guys have experience with pseudobursa? I am still waiting for an LE referral and its been almost a week. I was hurting pretty bad tonight and took one of the vicadin Ive been hoarding for times like today.

  • goldie4040
    goldie4040 Member Posts: 2,280
    edited October 2013

    Hey Sweet, just looked up what pseudobursa is, because I had not clue what it was.  That could be your problem.  I guess you can bring it up with your surgeon.  It doesn't sound unfixable, but it does mean opening your incision and cleaning you out.  Hey, just remember it could always have been worse, and we got to keep counting the blessing.  Your flap is healthy!  Right?! Ugh, I am so sorry you are miserable.  I hope you get the appts you need scheduled.

  • liefie
    liefie Member Posts: 2,440
    edited October 2013

    Kuka, so happy you like the new job! Yes, I also found that I was a better, more patient mom the times when I worked. Being home with children all day can be very challenging.

    Sweetpickle, so sorry to hear of your ongoing problem, and hope you get in to see an LE specialist soon.

  • lahela
    lahela Member Posts: 515
    edited October 2013


    Thank you all for your thoughts and prayers and supportive words - it really does help a lot to know you are all in my corner. It's morning here and I feel a bit stronger, in a lot less pain. Still can't use my left arm at all, but no fever so I'm staying positive.

    Goldie - my sister had BRCA screening which turned out negative (a huge surprise to the geneticist) but her report said very clearly that even though she wasn't BRCA+, it was likely to be genetic when viewed with the family history. IMO, Myriad Technologies (the company that owned the BRCA gene) tried to push the idea that if it wasn't BRCA then it wasn't genetic in order to lock out other research and that has held back identification of other genes or gene combinations.

    Kuka - so glad to hear the job is going well.

    pattysmiles - I pressed my hands flat on my belly and gently pushed down to hold the scar together when I coughed.

    hrf - good luck with your appointment. I hope things are getting better for you.

    sweetpickle - sorry that you are having to find your way through a new maze. I hope it can be resolved soon.

    I am looking forward to hanging out in the moving on thread with all of you as we go forward on this journey. In the mean time, I have to get better enough to move on! But we will all get there in the end.

    Edit to add: DH brought something up this morning. When I saw the PS last Tuesday when I had the first sign of infection, she should have ordered an ultrasound and this thing would have been caught earlier, before it developed a fistula. Instead, she took 5 minutes with me, handed me a prescription and that was that because it was her last week before she moved to start her new job in Berlin, so was obviously preoccupied with that. I wish I'd had my "looking after me" mindset then!

  • nihahi
    nihahi Member Posts: 3,841
    edited October 2013

    lahela...don't spend energy on the "should have" mindset. Sometimes it takes a really big push, to help us move out of our normal, well established comfort zones. Now that you've become your strongest "advocate" I bet you never go back. I don't know if many docs would have initially treated you any different anyway. The important thing is you are being appropriately treated and cared for now.

    I think bc (and really any kind of cancer) is still not fully understood, or obviously there would be more ability to effectively treat it or even prevent it from occuring. If there is a strong family history, there is some kind of genetic component, even if it is not understood or identifiable at this point in time.

    (Hence my dislike of the pink "awareness", which I would rather be more directed to research and treatment developement and active patient support.)

    Sweet....anyway you could call someone and make sure they stay on top of this referral???

    Have good days ladies....love you all.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2013

    Hmmmm......incidentaloma???? CT/PET scan shows a "mildly prominent left internal mammary lymph node" that is lighting up. There is nothing at this time to suggest that it is recurrent carcinoma, however close follow up is recommended. MO/BS says repeat CT in three months. However, in talking with NP in office we will do in two months since I have stage II scheduled on 12/19.





    Oh, bother.



    Back to the "worry and wait" portion of this fandango.

  • nihahi
    nihahi Member Posts: 3,841
    edited October 2013

    I am never getting out the door this morning.....

    bailey...isn't that the same area they did the vessel connections on you....likely just a lymph node reaction to someone messing around in that area. Deep breaths....Wilbur has SO got this covered!!!!!!!

  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited October 2013

    Bailey, that s$cks. Praying for peace in the waiting and for it to just go away. We're in your pockets. Hope they are HUGE!

  • hrf
    hrf Member Posts: 3,225
    edited October 2013

    Bailey, there could be many benign reasons for that node to light up. Good that you are staying on top of things. Once a person has had bc, anything slightly "off" becomes a cause for concern.



    Kuka, glad you are enjoying your new job.



    I took only a short time off when each of my kids was born even though my original intention was to be a stay at home mom. But things never seem to go as planned and I also didn't love being a stay at home mom. So I worked for 41 years and had an amazing career. My sons have grown up to be great husbands and fathers. They cook. They clean. They do laundry. Now that I am retired from work, I love having time to do as I wish. And I love spending time with grandkids.



    Anyway, who has time to work when dealing with medical issues? Saw the PS today and she is very pleased with how the healing is coming along. So I'm happy about that. BUT, she feels it is time to do revision #1 (or stage 2 depending on your country) I'm booked for October 21 when she will remove necrotic tissue and reposition the foobs and even them out. She said it will take only about 90 minutes and I go home the same day. There will probably have to be a stage 2B or 3 depending on how you count.

  • lahela
    lahela Member Posts: 515
    edited October 2013

    {{{{{Bailey}}}}}  Fingers and toes all crossed for you!

    hrf - I'm so glad to hear that things are moving forward for you. Hugs for you, too!

    Spent half the day at the hospital today. Saw BS who has organised US and appointment with another doc in late Oct for the cysts on both ovaries. Saw the MO and am now satisfied with his decision not to do chemo (he explained it all really well, took me step by step through the process - why didn't he do that a month ago?!) but I've decided to go to my GP about a chest x-ray because I'm paranoid about that, being a long term smoker with lung cancer in the family. Then saw the PS and had my lavage - they had to open up the fistula and it was all really, really gross and ouchy but the lavage itself didn't hurt as much so that's a good thing! And the cultures they did yesterday showed no signs of staph. *phew*  NP said I could be having the lavages for three to four weeks, though! Ugh! And the PS intern said I'm very sensitive to pain, as he gave me the local  *blush*

    All in all, a busy but productive day.

    Love and hugs to all of you and gentle healing wishes to the newly minted flappers.

  • liefie
    liefie Member Posts: 2,440
    edited October 2013


    Bailey, big hugs to you! Hopefully it is nothing sinister, and just another after effect of surgery.


    Lahela, big hugs to you too. So good no staph infection, and best wishes for your healing. You are so brave getting those 'lavages'. I cringe just hearing about it!

  • jlbloom
    jlbloom Member Posts: 228
    edited October 2013


    Bailey, I'm so glad there are knowledgeable ladies on this thread. At least they can help put your mind at ease. You are in my thoughts and prayers.


    Lahela, hope that isn't as painful as it sounds.


    Good thoughts and healing prayers for all. ...Julie

  • Morningsun1
    Morningsun1 Member Posts: 649
    edited October 2013


    Bailey, maybe that one node is working too hard because other ones around it were taken out?

  • goldie4040
    goldie4040 Member Posts: 2,280
    edited October 2013


    Lahela, glad you are feeling a little better about the status of your infection. I do the "what if" thing all the time too, and Nihani is right, it does no good at all, but I know how you feel.


    Bailey, "INCIDENTALOMAS!!!!!" suck. I have had too many of them stand in my way. Make it feel very unwelcome, and it will go away. I am sorry you have to worry about anything at this point. Keep your eye on the prize. I agree with Tammy, it is just working to hard. When I had that radioactive sentinel node scan the day before my bmx they lit up my mammary nodes on purpose. I know just where mine are. My surgeon said they never touch those. I just said, "okay" but didn't ask why.


    Hrf, glad you are doing so well, and moving on to the next stage.

  • christina0001
    christina0001 Member Posts: 1,491
    edited October 2013


    bailey, I hate scans for this very reason, seems like they always come up with something. I hope it isn't weighing on your mind too much.


    hrf - wow, October 21st! That's not too far away! And 90 minutes is cake compared to what we've gone through.


    lahela - I'm so glad things went so well for you today. Sounds like you are on the right track with things. I hope your appointments for those cysts aren't causing you too much worry. I know I hate waiting for appointments.


    Have a great weekend everyone! We are going camping this weekend so I won't be on.

  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited October 2013


    Have fun, Christina!


    Lahela, so good things seem to be getting better for you.


    Hrf, yay for an Oct. appointment! Me, too, the 16th.

  • Cherrie
    Cherrie Member Posts: 1,423
    edited October 2013


    Bailey- Sorry you have to join the sit and wait club again. We have all had too much of that. Thank goodness your medical team is on top of it. I am sure it will all turn out fine.


    Goodie- thanks for the black bean burger recipe


    Lahela- Sounds like you have been through the wringer. Time to heal now right?


    Kuka- Great news on your job. It must make you feel good to go to a job you are enjoying. Congrats!


    I was a working mom also. Both my husband and I were teachers. Our family could not live on one salary. My children went to our neighborhood school which is where I worked. I didn't miss out on anything. I felt fortunate, but hated my babies in daycare before school age. We are now one year retired after 35 years of teaching.

  • nihahi
    nihahi Member Posts: 3,841
    edited October 2013


    lahela....I wonder how "sensitive to pain" that PS intern would be if someone found a tunneled abscess on one of his testicles, and reamed it out with lavages?????

  • sweetpickle
    sweetpickle Member Posts: 749
    edited October 2013


    Bailey- Ugh, I hate that you have to sit on this waiting for results but I am sending all my all clear vibes your way!


    Lahela- Ooooooouchy! I am glad to hear that you are healing!


    I heard back from PS nurse today and she said she sent the referral over for the LE specialist so hopefully Ill hear back from them on Monday. She didnt seem to think I have a seroma or pseudibursa because its my entire abdime swelling but the LE person should be able to diagnos it if it is lyphedema. I laid down with my feet elevated above my heart for most of the afternoon which helped a lot with the swelling tonight. Im still swollen, just not as much.

  • goldie4040
    goldie4040 Member Posts: 2,280
    edited October 2013


    Sweet, I sure hope they can figure out what is going on with your tummy. Even if it's not lymphedema, which I pray it isn't, the LE therapist should be able to help you redirect the drainage in your tummy. When I had my hysterectomy I had swelly belly for close to a year. When I went to work I wore light compression cami's under my clothes, which made me look better anyway, and it helped with the swelling. One day I realized it was gone. I hope that happens for you.


    Bailey, I am still putting positive vibes out there.


    Going to my 5 year old grandson's soccer game tomorrow morning. Go Warrior's!

  • nihahi
    nihahi Member Posts: 3,841
    edited October 2013


    fyi.....tammy emailed me a diagram today showing all the different lymphatic drainage systems that she thought might be helpful. I have tried various ways to get it posted on her.....just can't make it happen, sorry ladies.

  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited October 2013


    nihahi, you tried taking a photo of it and posting it? Of course, I have seen LOTS of lymph charts. :(


    Sweet, if you don't hear from the LE person Monday, give them a call. I have become much more "in charge" since dx. It feels good!


    Cherrie, I hope you get at least one sunny day when you're here in November!


    Julie, nice to hear from you!

  • Goodie
    Goodie Member Posts: 244
    edited October 2013


    goldie - do you have a recommendation for a good beginner yoga dvd?

  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited October 2013
    Bailey, I'm joining the pocket party. You'll be in our prayers tonight, and we'll all be doing the watchful waiting with you.


    Lahela, your PS intern needs to get his facts straight. Even a big dose of injected local anesthetic doesn't do a great job of blocking tissues that are infected. Pain hurts.


    Sleep well, gloobsters!


  • nihahi
    nihahi Member Posts: 3,841
    edited October 2013


    sweet....Did I read your post right??? You kept your legs elevated for quite awhile, and your tummy swelling went down???? Can't explain that one...be sure to let your lympha person know about that.


    jeannie...have an awesome day....take breaks between casting. Hope you make some good connections with some wonderful ladies.

  • Sharon1942
    Sharon1942 Member Posts: 272
    edited October 2013


    I just had to come back & share this with you dear ladies.


    Here is a link to the benefits of walking to lower BC risk that was featured on CBS news last night.


    http://www.cbsnews.com/8301-204_162-57606064/walking-seven-hours-a-week-may-lower-breast-cancer-risk/

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