Diep 2012

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  • dltnhm
    dltnhm Member Posts: 873
    edited December 2012

    @RonnieKay and Curveball.

    Radiation therapy following masectomy and chemotherapy may also be indicated depending on the number of nodes in the final pathology, the presence of lvi may also come into play, and where one is staged.



    In my case, there were 28 days of treatment - no boosts, the supraclavicular nodes were 'hit' as these would be the next point of spread from the axilla (even though all of my nodes were not removed in the axillary excision)



    We are all individual cases. :-)



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  • JuicyJackie
    JuicyJackie Member Posts: 41
    edited December 2012

    Dear Sisters...

    Some rough going here, the drain from hell will be celebrating week ten on Wednesday...but my BS will be doing the Capsulectomy on Wednesday.  :(  So that really blows my chances for my Diep flap happening this year...guess I jumped on board here a little too soon.  You all have been wonderful sharing your experiences and I thank you.

    bdavis - Good news, I think you will be happy to know I have an appointment with Dr. Chang tomorrow afternoon.  I had this appointment set up with Dr. Chang before this new information from my BS came to light.  I'm hoping that I'll be one of the Deip 2013 sisters.

    Peace and Gentle Hugs!

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  • bdavis
    bdavis Member Posts: 6,201
    edited December 2012

    Jackie.. Glad to hear you are all set with Chang. I never met him, but I am confident you will be happy.

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  • fredntan
    fredntan Member Posts: 1,821
    edited December 2012

    Jackie I went by his office and hosp. Mercy. It looks nice. Security is very tight. They wouldnt allow me to go upstairs to get feel for hosp. I found lot of good reviews for mercy. All room private.



    Took long weekend to Charleston SC to celebrate my moms BD. That wore me out. My tailbone cont to hurt. Very painful to bend, roll over in bed. The car ride down there was soo long.



    Cording same in good arm, tightness continues in bad arm pit



    Had so much fun in charleston. My sister and I went out to gay bar and then saw dragg queen show. And we danced. Went to many bars. Probably why i amso sore now



    Planning phase two for march

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  • JuicyJackie
    JuicyJackie Member Posts: 41
    edited December 2012

    fredntan - Good to hear the security is tight, I was a bit worried about that.  From all that I've read I think this is the right doc/place for me. 

    Did you break your tailbone from your dishwasher fall?  I hope it all heals up and stops giving you grief.  Years and years ago I broke my tailbone, finally had to have it removed, not a fun recovery.  I might want to mention that to Chang when I see him, it still is VERY uncomfortable if I would lay on a hard surface.

    bdavis - Thanks for recommending him!! 

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  • Linda-Ranching-in-the-mTns
    Linda-Ranching-in-the-mTns Member Posts: 319
    edited December 2012

    Fredntan, what are you doing to help the cording and tightness?

    I am now almost one month out - and still experiencing pain, restricted movemnet. tightness that limits my ability to reach up, down, front and to side. Left arm will not fully extend. 

    We live 3.5 hours from nearest physical therapist ...

    But I sure don't want to blow this off and end up with long-term problems that could have been avoided...

    Thanks, and glad you had so much fun!

    Linda

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  • MartyJ
    MartyJ Member Posts: 1,859
    edited December 2012

    Ruby - I am 3 weeks out now.  I feel stronger every day, but my body is really quick to remind me when I have overdone.  When I had my hysterectomy, my doc told me that my body needed 6 weeks to heal properly and she was right.  At the six week mark I finally felt right.  I am giving myself 6 - 8 weeks recovery on this surgery, too, per my doc.  This surgery was big and you need to be really patient.  We all try to push ourselves to recover faster than our bodies because we often have others depending on us or places to go/people to see.  Just give yourself time.

    Linda - sounds like you had a wonderful day!  You will sleep well tonight.  

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2012

    Ruby, I too am 3 weeks out. Looking back, two weeks was a bit frustrating because for the most part I felt pretty good, and then fatigue would hit me and I wondered if I was getting stronger at all! But as everyone else said.....give it time. I'm finding it easier now to give myself permission to rest often, take naps, and let my DH pamper me. ( yesterday he vacuumed, dusted, washed the dogs AND made dinner!)



    Question: when can you start sleeping on your side? I don't have an appt w/PS until the 27th and I'm finding the sleeping only on my back is hurting my back and preventing me from sleeping more than 2-3 hours at a time.....then I have to get up and walk it out for 30+ minutes before I go back to bed.

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  • Linda-Ranching-in-the-mTns
    Linda-Ranching-in-the-mTns Member Posts: 319
    edited December 2012

    I am almost 4 weeks now -- but have been experimenting with side sleeping and not using the wedge (12").

    My nurse said anytime after 3 weeks these were OK -- as tolerated.

    I would double check your post-surgery instructions, to make sure your docs are in agreement with my docs :)

    I can do about half the night without the wedge (nice to snuggle on same level with my Darlin' :) But then I wake up feeling 'wrong'... not pain, just wierd, and want my wedge back.

    Same with side sleeping -- It feels SO great to do it for about 20-30 minutes... then I am back on my back, as much as I don't want to be. I think the girls aren't used to hanging in all directions yet... and each day they seem more flexible with how I treat them... slowly the kid-gloves are coming off and gradually normal life is returning.

    My honey gave me my first normal-strength full-frontal good-bye hug with the kiss this morning... He just wasn't thinking about "being careful" -- didn't do it on purpose and immediately backed off, all apologetic -- but I LOVED it!

    Oh, the excitement of the 'normalcy' of it!  :)

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2012

    Thanks Linda! I'll check w/ my BCC to see if I can try it!

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  • Cherrie
    Cherrie Member Posts: 1,423
    edited December 2012

    My doctor said I needed to be on my back for 6 weeks. I am in a recliner. I take a Tylenol PM to help with backache and sleep. Those flaps need time. Be cautious! We have been through so much to get where we are now. My doctor said I would need patience and it is soooo true.

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  • Linda-Ranching-in-the-mTns
    Linda-Ranching-in-the-mTns Member Posts: 319
    edited December 2012

    Cherrie -- I couldn't agree more! 

    Nothing strenous, and anything that doesn't "seem right" -- instantly back off. 

    I think my body agrees with your doctor's "6 weeks" more than my doctor's "3-4 weeks" re the sleeping on the back...

    I think the key is to never do more than feels good, and when in doubt -- wait.

    'Night all

    Linda

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  • Rubybleu
    Rubybleu Member Posts: 32
    edited December 2012

    Evening Ladies,



    Thank you very much for the feedback. For the record, I too had a bilatteral mx with recon and this two week mark is very frustrating ..... I am used to running a very busy household and I want to get up and move.... then Mother Nature says "back to bed missy!" I can't seem to get off the pain medicine either. Everytime I try I regret it... Today was good. I rested and let the other adults in my life (Mom and DH) tend to the children ( 2 & 8 year old boys), the house, the animals (2 dogs, two cats, 14 fish, 17 chickens) the bills, the cooking ...........etc.



    Now I am resting again after a brief visit with the adults..... I am lucky and thankful to have a wonderful support group and to have found this site. What a relief to have all of you to discuss this personal and very painful experience with.



    By the way, Linda your home sounds fabulous! The perfect escape from all of this madness :)



    Love to all,



    Ruby

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  • Rubybleu
    Rubybleu Member Posts: 32
    edited December 2012

    One more thing,



    I too am a tortured side sleeper. I bought a "four way flip" pillow from bed bath and beyond and it has been a life saver. So comfortable I forget about wanting to sleep on my side when used with a pillow under the knees.



    Sweet dreams,



    Ruby

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  • fredntan
    fredntan Member Posts: 1,821
    edited December 2012

    For the cording I wearcompression sleeves. It will justtake time. Had it before during taxol



    Linda PT is overrated. I have learned all the exercizes now. She taught me LE massage. Now if I could just commit to doing them. I guess i overdid it a few weeks ago



    The xray last week says i didnt break anything.

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  • mamade3
    mamade3 Member Posts: 1
    edited December 2012

    Hi there!

    Just wanted to post a recomendation if anyone is looking for surgens in the northeast.  I had Dr. Dixie Mills (mastectomy) and Dr. Adam Tobias (recon) at Beth Israel Deaconess, Boston.  Dr. Mills was exeptionally kind to me and my family; she is extremely down to earth.  Dr. Tobias is more of a "talk shop" kind of guy; but a GENIUS for performing DIEP flaps.  It was the right balance for my surgery team!  I'm 2 weeks out and feeling good, and absolutely LOVE my new foobs!Laughing

    Shirley

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  • MENA1954
    MENA1954 Member Posts: 194
    edited December 2012

    I am also a side sleeper and sleeping on my back was torture for me. I don't sleep well as it is, but sleeping that way was a sure way to achieve many sleepless nights!  I had my drains in for 2 weeks and the day I had the last one removed, marked the night of my return to SIDE SLEEPING!!!  Oh what joy that was........

    Mena

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  • Linda-Ranching-in-the-mTns
    Linda-Ranching-in-the-mTns Member Posts: 319
    edited December 2012

    fredntan -- Yeah -- I figure I will need to go the the PT at least a couple times to learn what to do -- but I sure hope to skip frequent visits -- we are far far from everywhere (and love it that way!)

    For instance, though - I know that one way must be "into the hand" for the lymph fluid, and another path "out". I would like to think we are rubbing things in the right direction, not backing things up even more by pushing fluid 'upstream'. It is easy for me to imagine what is going on in there, although I try not to, so as to not encourage it to be worse than it is! But it feels like some 'rubber bands' have been broken, and now are knotted up in my upper elbow, when they should take this fluid back up to my armpit and out. 

    Luckily no swelling -- but l saw my first 'cord' last night, as I did my stretching exercises up the wall. Thinking maybe it was just a normal tendon/ligament (whatever), I repeated with my good arm -- and nothing cord-like appeared there. And -- all along the 'cord' is exactly where one source of pain is. 

    I weigh close to 200, so although I am in great physical shape from all the exercise out here, I do carry some "extra curves" :) The website I went to about cording has photos of a SKINNY gal -- and her cords are very noticeable... since I wasn't seeing any cords (until last night) -- I was keeping my fingers crossed that this AWS was not going to be for me.

    Anyway, I think I will give it a week and then call my onc to set up a couple of PT sessions for me, so I can exercise correctly through the holidays.

    So glad to hear your tailbone isn't broken -- but my heart goes out to you -- a bone bruise can last a while, and be quite painful! But (pun intended :) Maybe God was trying to slow you down for some reason. :) Hope you can relax and enjoy some extra down-time while you heal.

    Good luck!

    Linda 

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  • Linda-Ranching-in-the-mTns
    Linda-Ranching-in-the-mTns Member Posts: 319
    edited December 2012

    Ruby -- I can't imagine doing this with 2 young boys in the house! You must be one strong woman -- how lucky you are to have the help from your DH and mother... 

    About my 'house' -- it is tiny, and although quite comfortable -- nothing fancy. Full of my art work and cooking equipment -- and his guns and taxidermy :)

    However, the ranch itself is amazing!

    My wonderful boy friend (that sounds funny at 57, and all we have been through together) --he is the most 'MAN' and least 'boy' that I have ever known. :)...

    Anwyay ... Les is a wild-life biologist and has lived/worked here for about 13 years now. Over 600,000 acres (larger than most National Parks), ranging from about 6000' elevation (prong-horn antelope and prairie dogs in the short-grass prairie) up through the Pinion Pines into the Ponderosas, Spruce, Firs and the stunning Aspens (in the mid-ranges) then into the uppermost high country (at about 13000', comparable to the Rockies) -- tundra with snow nearly year round.

    Les manages the wildlife here: about 9000 elk, 1500 free-range bison, about 3000 wild horses, countless antelope and deer, with a smattering of bears, bob cats, mountain lions and even bald eagles!

    We see wild animals every single day -- I can't believe my luck to have found the most wonderful/supportive/sexy man on this planet (at least for me :) -- and not only to find him living in this fantastic place -- but (upon my dx) to have him invite me here to share the experience with him as my partner. What a man. 

    E-Harmony rocks!!!  (My 60-year-old sister married her E-Harmony connection, too :)

    I tell you -- God waited until I had the right set-up before the BC was revealed. :)  I keep thinking about the story of Heidi -- and how here invalid cousin Clara ended up convalescing in the 'clean mountain air' of the Alps...

    Well -- I guess I am just like Clara... with Cinderella combined -- since I get my Prince Charming to boot! :)

    Today Les is at work (left at 6am and won't be home until about 9pm tonight -- long day.) I Have decided to spend the rest of the morning OUTSIDE in the glorious sunshine! What a fantastic day it is out there!

    I encourage you all to take a minute to do the same -- Just step outside (into your own back yard) and close your eyes. Turn your face to the sun. Listen to the birds and the wind in the trees... Drink in what a  beautiful place this earth is!

    My best to you all on this GLORIOUS DAY!

    Life is GOOD!

    And we -- each one of us -- is incredibly blessed. :)

    Linda  

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  • Marcie47
    Marcie47 Member Posts: 248
    edited December 2012

    Wow, so eloquently said....just to remember how simple it is to re-align ourselves when we get side tracked :) it really is that simple!! Thank you again for showing us how... Stop and look around at the beauty of your surroundings and it does help set your day :))

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2012

    Linda, YOU rock!!!

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  • Rubybleu
    Rubybleu Member Posts: 32
    edited December 2012

    Linda,



    I know what you mean about being in the right place to handle what comes our way. I feel blessed that my stars were lined up too.... Good husband, loving children, Mom available etc. I think we all feel this to an extent. This trip, experience, whatever you want to call it has opened me up in a way I never would have expected. I am grateful for that.



    I love the description of your surroundings...... Although I live on the east coast now, I grew up in the west. Now I live in an old forrest, with lots of little critters running around and the Long Island Sound about 300 feet from my back door. As I type this I can hear the water.... Now I am going to get up from my nap and sit outside :)



    Thank you for the inspiration :)



    Be well,



    Ruby



    P.s. Hi Marcie - I hope you get outside today too

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  • Marcie47
    Marcie47 Member Posts: 248
    edited December 2012

    Hi Ruby, you too sound like you see the beauty all around you, I got out for a walk today even though I still look like I am looking for a penny on the ground ....lol.

    This sight rocks and so does all the love that is spread to answer questions, share experiences, send energy or whatever is needed to put sisters around the world on a smoother path of a rough journey.

    This journey has certainly taught me to appreciate my life and surroundings :)) enjoy your day!!

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  • Linda-Ranching-in-the-mTns
    Linda-Ranching-in-the-mTns Member Posts: 319
    edited December 2012

    Marcie-- so glad you are feeling better both emotionally and physically!

    I don't know if I told you all -- (been posting on several threads, and of course people keep dipping in and out) -- but I was my father's caretaker in 2010 and 2011 for his cancer journey, including chemo/radiation/lots of treatment and surgery and doctor appointments -- and then I stayed with him 24/7 in Hospice as he died (from a surprise stage IV brain tumor0.

    Sharing his last days of living and leaving -- was probably the most powerful experience of my life.

    But instead of the tragic heart-breaking traumatic event that I expected Dad's death to be -- I expereinced epiphany after epiphany, and was miraculously changed (for the better) for life.

    In one of the wonderful conversations Dad and I shared in those last days, I jokingly asked Dad if, after he got to heaven... he would send a good man my way. Les quickly floated to the top of the stack of men I was communicating with-- even before Dad passed... and I love seeing Dad's hand in this choice of man and location.... I often feel him here with me, and see him in the glorious mountain vistas and gorgeous sun sets...

    Honestly, I wonder if Les and I would have connected had I not had the experience with Dad. It changed me to the core -- a huge opening of Spirit and Mind. Just like with any experience good/bad -- each thing leads us to the next, and without step A, step B might ever have taken place.

    So too it is with our individual cancer journeys. This path will lead us where we need to go.

    Back outside for me!

    Linda

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  • Kadee63
    Kadee63 Member Posts: 8
    edited December 2012

    I had Diep May 2012, some revisions in Oct. Now im feeling more tightening and pain in my abdomen. It still hurts to stand up straight. Is this normal ?  I do see my doc next week to talk about the next surgery.  I am still very uncomfortable.

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  • fredntan
    fredntan Member Posts: 1,821
    edited December 2012

    I hope you are feeling better kadee.



    I am going back to work this morning! My last big recovery is over! Back to be a nurse and not a patient. I have learned a lot

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  • Rubybleu
    Rubybleu Member Posts: 32
    edited December 2012

    Good for you Fredntan! :)

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  • Jennt28
    Jennt28 Member Posts: 2,021
    edited December 2012

    Congrats Fran ! Have a great day at work.



    Jenn

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  • JuicyJackie
    JuicyJackie Member Posts: 41
    edited December 2012

    Congrats Fran on getting in nurse mode rather than patient mode.  I hope all goes well.

    I went to Baltimore and got kind of bad news, Dr. C doesn't think I would be a good canidate for DIEP flap, which almost brought me to tears.  His reasons were that I was once a heavy smoker (I stopped in '04), I have a vertical C-section scar and my age.  He really scared me with the the things that could go wrong and the agony of fixing those things.  I'm sure I could have talked him into it, but I must stay on the safe side.  He is a very compasionate doctor and wise man, it was a great pleasure to meet him after hearing such wonderful things about him.  He has suggested and I've agreed to right mastectomy and implants on both sides, the surgery is scheduled for Dec 13th.  I'm sure he will make some awesome boobs for me.  Until now I hadn't even read up on implants because I so wanted the DIEP.

    Well my name might not be so correct anymore, while in Baltimore they pulled the drain out and all is going well.  Dr. C said that the drain was aggravating the seroma that's why it kept draining (50 - 60 cc per 24 hrs). My local bs was going to put me through an unnecessary operation... and she was supposed to be the best bs in my area.   I'm so angry, she stapled me up after my mastectomy, I look like a Tim Burton character.  The bs and ps in Baltimore said they never heard of anyone leaving a drain in for 10 weeks and couldn't believe she wanted to operate on me again, they were distressed that my scar is so horrible.  I wish I had found you sisters before I went along with all that my local bs told me.  

    But I can't cry over spilt milk, I'm good, I'm confident that I'm in good hands, the people at Mercy Hospital are fabulous, and I have you lovely ladies to help guide me.

    Bless you all.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2012

    Congrats on the drains Juicy! I'm sure your healing will progress well now that you have a new team on your side!



    Congrats Fred too!



    I got my first really good sleep last night since the surgery! My PHCP put me on an anti-inflammatory drug and referred me for PT for my arm pain that has not resolved and has kept me from sleeping more than 2-3 hours at a time. Hallelujah! I think I'm turning another corner!

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