DIEP 2013

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  • Pattysmiles
    Pattysmiles Member Posts: 954
    edited June 2013

    I agree with all of you regarding a counselor. However....a counselor, like a doctor is only as good as the knowledge he/she has.

    I have a nurse navigator, I can turn to her for "advice" and assistance, but I find I learn a lot more here, I also feel her suggestions are "biased".

    So I take some of what I learn here and add it into the mix when speaking with her and then make my decision.



    I will say this,...I wasn't directed to my nurse navigator immediately after diagnosis. I turned to the Internet for my info. My only "wish" is that SOMEONE had told me it is a PROCESS that can take months or longer. I naively thought I would be done with all within a matter of weeks! Lol. I think a nice flow chart,with the "possible outcomes" along with time expectancy would have been nice. I know it would freak some people out but I am a planner by nature, it would have helped me out immensely to know the "worst case scenario".



    Pat

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  • Lmo45
    Lmo45 Member Posts: 39
    edited June 2013

    Wow, just catching up on everything, missed 4 days!!



    Glad to hear our surgery girls are on the other side and healing!!



    Nihahi - what a gorgeous picture !!!



    Faith - sorry to hear about your Grandfather.



    Kuka - thanks for tip on bras, I'm now allowed out of compression bra, but I can't find anything that is working. I bought 3 at Maidenform, I think similar to the ones referenced at wallmart and wouldn't you know that I'm reaching back for damn compression bra. Still have a lot of pain!!!



    Sbelizabeth- thank you for your chemo tips. I got the one about Claritin from the nurse and also took your advice about the constipation, so far so good . But chemo is not being too good to me. I can't sleep and it brings me more pain to breasts and gives me a headache that only Advil cold & Sinus will handle.



    I went for cat scan a few hours before my nulasta shot and the onc had gotten the results. Some of my lymph nodes are enlarged and tiny spots too small to biopsy showed on my lung. I now need a pet scan Wed. So on top of first chemo, healing breasts, etc., I have all sorts of worry about pet scan. Could be why I'm not sleeping? Onc have me Ativan to help sleep and my sleep was so interrupted every hours last night, that I'm afraid to keep taking it.



    During surgery, my surgeon took 4 sentinel nodes and they were clean, so hopefully enlarged nodes are due to surgery? I'll keep you updated.



    I don't know how I'm going to handle 7 more of these treatments?!



    I haven't watched Downton Abbey, but need to!!!



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  • jlbloom
    jlbloom Member Posts: 228
    edited June 2013

    Pat,

    I agree with you totally.  My biggest frustration is thinking I'm going in one direction only to have it change drastically.  Then I sort of regroup and get ready to do in another direction.  Right now I'm waiting for an oncotype test to see which direction we go next.  I have at least started setting myself up with either or scenarios so the adjustment isn't so disconcerting. 

    Maybe they know we couldn't handle it all at once!  These forums are great because you all have been there done that and gently guide some of us along. 

    If we can use our experience to help someone else, it was all for a purpose.

    Julie

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  • Kimmiemac
    Kimmiemac Member Posts: 1
    edited June 2013

    Hello ladies,

    I am considering the DIEP procedure. What thoughts, comments or suggestions can you offer? I have 3 children ages 10,8 and 3! I am considering surgery once the kids go back to school.

    Thanks,

    Kim

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

    Kimmie, have you already had your mastectomy, or are you planning to have it all done at one time? That makes a bit of a difference in the recovery tim.

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

    Marty, I answered her.  I even wrote her a PM, but I never heard back.

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  • kuka21174923
    kuka21174923 Member Posts: 427
    edited June 2013

    Marty I wrote her too but didn't hear back either.

    Kimmie, I have 3 kids ages 8,6 and 3. I had no problem and had the mastectomy at the same time.

    Laying by the pool today and resting my legs. My shin still hurts but I think is getting a little better

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

    Lmo45, sorry to hear about the spots seen on CT scan, as if you don't have enough to contend with already, eh? The enlarged nodes are most probably because of the surgery - they are working hard during the healing process, and to stave off infection there. As for getting through chemo, one really has to take it one step at a time, and sometimes one hour at a time. The first time is the worst. With my first cycle I felt as if my misery was neverending, everything looked so bleak, and the chemo road ahead looked so long. Was also still healing from the mastectomy 4 weeks before. With every chemo it got better, I got more used to it, knew what to expect, and handled it better. Time started to go by sooner, and eventually I was done. Be very good to yourself, and just let it run its course. It will get better. Big hugs to you!

    Catie2013, have a good visit with your dad and your son!

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  • Moviemaniac
    Moviemaniac Member Posts: 949
    edited June 2013

    Good morning Flappers......



    Faith, so sorry to hear about your dad. My mother, who is 96' and has age-related Alzheimer's, lives with me, and even though she is close, there is not much I can really "do"...... Not sure that distance makes much difference, except in how often you see them, of course. The thing I tell myself is, "take care of yourself, so you CAN take care of her.....you are no good to her half-dead"..... Just enjoy the time you have together.



    Sherry, you mentioned you lived in Sapporo for a year. Do you mind me asking why? My DD is teaching English (this is her 2nd year) and she was posted up in Rusutsu last year....a bonus for her since she is a ski nut. I loved, loved, loved my visit! Wish it could have been a month, instead of a week! I came back 3pounds lighter, probably from a combination of a raw fish diet, having to use chopsticks to eat anything, and walking EVERYWHERE......trying to keep it up back here in Oregon.....everything but the walking everywhere is working.......I also found myself addicted to TImTams ( cookie/biscuit from Australia) seriously decadent and habit-forming......



    2 new veterans today, right? Hope all is well. Going on 5 months post DIEP and still no date for stage 2......have appt. end of June, maybe I will get lucky then.....



    Hope all you insomniacs get to sleep tonight.....I have had the opposite problem.....too much sleep.....been walking around like the dormouse in Alice In Wonderland.....always dropping off to sleep.....damn jet lag!!



    Hope everyone has a relatively pain-free day......(((hugs)))



    Namaste and God bless - Jackie

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  • Moviemaniac
    Moviemaniac Member Posts: 949
    edited June 2013

    Okay.....I am seriously losing it.....Faith, I knew it was your grandfather , but Catie has her Dad in Hospice, and.....I have morphed you both into one......thanks to my dulled brain capability.....so very sorry! I hope you both will forgive me......can I plead stupidity?!?



    (((Hugs))) to you BOTH.



    Jackie

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  • Morningsun1
    Morningsun1 Member Posts: 649
    edited June 2013

    Good afternoon Flappers and good afternoon, Movie, from my neck of the woods! I do have a stage 2 date: July 30, but I am not sure what will be done then. The list of things I discussed with my ps back in May may change when the end of July gets here.

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  • LyndaMarie
    LyndaMarie Member Posts: 92
    edited June 2013

    kuka - I am taking a page out of your book today. I have nine kids playing at the house. Three mine, six guests. I think it is actually easier though. My kids are so happy with friends over.

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  • Catie2013
    Catie2013 Member Posts: 1,023
    edited June 2013

    Movie, no problem - thank you for the words of wisdom about distance. After my mom died in '98 my two brothers and I have called my dad every day - part if a promise to my mom that we'd take "care of dad". Up until last year all it required is me being there when he had his other 3 melanomas removed and the hospitalizations associated with those surgeries. Pretty easy, he's always been very self sufficient. Now is a different story in reality, but he is 87 and in his reality he is sometimes 47 and still "having to get to the office" and catch the bus. Mild dementia plus brain mets.



    Btw- he went with me on my first trip to Japan 10 years ago as well as Alaska with DH and I 15 years ago. Those memories are fantastic! And we have enjoyed some great time together!



    Now if son can just get a flight - he's flying stand-by and weather here is iffy!



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  • RobinY
    RobinY Member Posts: 36
    edited June 2013

    Three weeks from tomorrow.  Wow.  I cherish all the good advice, yummy recipes, and heartfelt camadrie here.  I'm still in the keeping busy zone, and only have some fleeting moments of nervousness.  I'm mostly looking forward to getting to the other side of this and then moving forward.  My ps is of the six month wait for stage 2.  I'm hoping that my body will work with me and show him that I can heal up faster than that.  Would love to finish this by the end of the year. My boss is being really supportive (which amazes me) and my 20yr old son is being great and helpful, I've even been able to arrange for my 10yr old daughter (just finalized adoption right about the time of diagnosis) to go to summer camp for two weeks!  I drop her off on the Sunday before surgery, then Tuesday is my big day, and she'll come home almost two weeks later. All pre-op appts are set.  Really I just feel like these last three weeks will be me waiting for the day.  In large part thanks to all of you who have done this already.  I feel prepared, and ready.  I thank you from the bottom of my little flapper heart!

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  • Catie2013
    Catie2013 Member Posts: 1,023
    edited June 2013

    Robin - my experience is that now that you have your ducks in a row (and sounds like you do) that before you know it you too will be a veteran and on the other side! The time whizzed by for me that last few weeks (or so it seems it did at this point! LOL)



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

    Movie, you really are struggling with that jetlag - LOL. It should be getting better soon now. I don't even need jetlag to make stupid mistakes - it comes naturally. LOL.

    Robin, sounds like you already have everything organized like clockwork - before you know it, you'll be flapping with the rest of us. The positive attitude will stand you in good stead - it is so important, but you've got that down pat too!

    Questions. 1) 24 days out, and I can still not take in a full breath without some discomfort on the DIEP side of the chest. What are you guys experiencing?

    2) Can lift my DIEP arm straight up in a 'Heil Hitler' salute at a 45 degree angle, but no further. Should I be worried? My PS said no exercises after surgery, but I'm wondering.

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  • ssla01
    ssla01 Member Posts: 480
    edited June 2013

    I am not like Robin. My ducks are not in a row. I am less than two weeks away from Stage One. I have been cleaning house and closets like I'm "nesting.". No need to exercise, I am running around like a chicken with no head! Calm down Sharon, calm down. Lol

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

    Don't worry, ssla01, you will be fine. I was phoned at ten on a Wednesday morning and told to be at the hospital by six the NEXT MORNING for DIEP surgery - LOL. I survived with flying colours; you will too!

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  • Moviemaniac
    Moviemaniac Member Posts: 949
    edited June 2013

    ssla01- you will do just fine.....it's funny how important we think some of this stuff is (I know some of it is) but post-DIEP everything just sort of falls into place, and your priorities shift......promise! You and Robin will soon be joining the Flapper girls......and will be amazed at how quickly you adjust. :)



    Liefie, I don't need excuses for stupidity, but the timing happened to be just right! :P don't worry too much about range of motion this early.....at about 1month my PS had me crawling my fingers up a wall as far as I could COMFORTABLY...NO pushing it!



    Catie, hoping for a wonderful reunion with your son and dad.....fingers crossed!



    All you lovely ladies have a wonderful day..... :)



    Namaste and God bless - Jackie

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  • Dyvgrl
    Dyvgrl Member Posts: 471
    edited June 2013

    Hi ladies! Just wanted to send warm thoughts to those recovering this week and those about to get started. You are all in my prayers! Today I scheduled my chemo port surgery and bought 2 Coobie bras. So excited to get them. Right now I'm wearing the most uncomfortable chafing bra ever. Ugh!! I truly hate this TE!! Anyhoo, I know I'm months out, but gathering as much pre- flap info I can from all the veterans here. Thanks to the person with the coupon tip! I got 2 bras for $20 and 5.95 shipping to AK. If they are half as comfortable as everyone says, I'll be thrilled!! Ahh the little things... :)

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  • kuka21174923
    kuka21174923 Member Posts: 427
    edited June 2013

    Wow Lynda! 9 kids! What ages? I had 7 today from 9 years old to 3. You would think that with all these kids I would sleep good at night?

    I'm worried that the problem with my leg might be my knee and not my shin. I thought it was getting better and then it started hurting again! I'll rather have DIEP all ove again😭. How am I supposed to get fit if I can't even walk?

    Liefie, my arm movements are back to normal. I had my surgery April 23rd and I just couldn't lift them from 2-3 weeks without a little pain.

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  • Janet_M
    Janet_M Member Posts: 1,068
    edited June 2013

    Robin - I'm three days away and the wait is getting harder and harder. I've done everyhing except buying some loose pants. Today was pedicure day, because I was told that my compression stockings have peep toes. I also bought a bunch of extra pillow cases, a mattress pad, shower stool, and a thing that I can use to grab stuff off the floor. Bills are paid, dog care is lined up, the guest room for my mom is being fluffed up. I've booked a massage, filled out my disability papers and threw myself a party. During pre-op my nurse told me that I'm an 'over-thinker' which I already knew, but now I'm really putting it into action. The logical thing would be to have a big margarita to calm down, but this morning I went to yoga, and tonight Jim (my DH) want to go to a movie. I don't have a job to distract me anymore, so I have to keep super busy. All I want to do is lie around drinking margaritas, but my body won't let me. So I clean.

    Jakig should be walking up just about now. So exciting!Let the healing being!  I've been thinking about her all day.

    Looks like I'm next. I asked my anaesthesiologist for the biggest dose of ativan that he can legally subscribe. Without it, I'm picturing myself clinging to the doorway as they wheel me into the operating room. 

    Knowing that my dog is coming to visit helps a bit. Doesn't quite make up for losing my good nipple, but I look forward to his meeting up with him in the pet therapy room a few days after surgery.

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  • SheChirple
    SheChirple Member Posts: 954
    edited June 2013

    I was sitting her copmlaining about how I still hurt, but mostly where the drains are.  Telling myself, just 2 more days.  My phone rings and it's the PS office.  Can I come in Tuesday instead of Wednesday!!?  YAY 

    24 hrs and I hope to be drain free, which means 90% pain free, too.

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

    Remind me again, Liefie...if you had mx with diep that ROM would be about normal.  I can not speak of diep only surgery, but I have heard you are not allowed, even if you can, lift your arm above your shoulder for a certain amount of time.   

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

    shecherpie, sorry you hurt.  I hope they call too.  You are almost there.  Hang in there.

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

    Wow, Janet. You are the most organized person I know.  Sounds like you got it all together, and I know you surgery is going to go perfectly, just like the way everything else is planned.  What really impresses me is that your dog gets to come visit you in the hospital.  That is amazing.  I have heard of service dogs that come visit sick people in hospitals, but never have I  heard of your own pet being allowed to visit.  

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

    Shechirple- I hear your "drain pain".....I have an appointment Friday for check up and am hoping to get the 2nd hip drain taken out. I think I will have to keep the breast drain....still draining the stupid hematoma. I am so happy yours come out tomorrow...it's such a feeling of freedom!



    I had mx 18 months ago and had no ROM problems until after rads. I had no ROM problems after DIEP (this was unexpected for sure) and have no restrictions on how to move it other than not lifting over 10 lbs.



    To the ladies who are new here on this thread....we have a WIDE variety of restrictions after surgery....it truly varies from surgeon to surgeon. It is one of those things to ask your PS up front as far as what their standard protocol is. Then you may have specific restrictions added or deleted based on your specific case and circumstances. And mx and DIEP at the same time is different than those of us with delayed DIEP.



    Thinking of you Janet....how was your party?

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  • Janet_M
    Janet_M Member Posts: 1,068
    edited June 2013

    Goldie - You're very kind to compliment me on my organization, but I should confess that it's born from  anxiety. I'm pretty stressed, so I just keep making lists and finding things to do. It's not the normal me.  I've known about this surgery for a year - so I've had a lot of time to obsess. I know for a fact that I'm over-thinking things, but I've decided to let myself go crazy, and if crazy is where I need to be for the next few days - so be it. My vacuum cleaner is getting a pretty good work-out.

    The dog visit is so cool. During my pre-op, a nurse coordinator took us to the floor where I'd be recovering and they had a bulletin board covered with pictures of pets. I told him (the nurse) that I was going to bring a photo of my basset hound, and he said, 'Oh, why don't you bring in the real thing'. Jim and I got a little teary. They have dog therapy for those who don't have pets, and for those that do, there's a room set aside for them to meet. So amazing.

    My dog often makes his way on to my lap (and he's big!) but somehow, after my last surgeries, he knew that he couldn't put his paws on me and he'd just nuzzle my knees. I think he's a genius. 

    SheChirple - I'm saying a little 'lose the drain' anthem for you. Good luck. I hope you're drain free this time tomorrow.

    Bailey - I hope that your drains come out this week as well. That'll be so freeing.  And my party was fabulous, thanks for asking. I asked each guest (all ladies) to bring a few pics/photos of things that make them happy or inspired. After dinner,  I put up my favorite photo in the middle of a board and we made a big collage.  Each person took turns getting up and explaining the sentiment behind their photo and putting it on the board. We went through a ton of wine, so there was a lot of laughing, and a few tears. Jim (who had retreated after the barbequing was done) poked his head in to ask if he could add something, and he had a picture of me that he'd taken on a road trip - and it was sunset in Kansas and I was standing on the side of the road. More tears. And all my drunken friends told Jim he was the best boyfriend on the planet  - and now he thinks it's all about him. Hmph.

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  • Catie2013
    Catie2013 Member Posts: 1,023
    edited June 2013

    Thank you Movie and Liefie.



    Ssla - even if your ducks haven't got the memo to get in line yet- you will sorta just 'get there' by the fact that time just keeps on keeping on and before you even realize it will be over! I did the nesting too - nervous energy I think - but lay in the hospital bed amazed when I could realize it was over - at least the main surgery part - then on to the business of healing !



    Best to you all coming up!

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  • sherry35
    sherry35 Member Posts: 409
    edited June 2013

    Movie- I taught English in Sapporo right after I finished teachers college in 1996.



    Sounds like the girls that are up next are all organized and ready to go! I hope I will be ready for the end of July.



    I've been packing up my classroom after hours and will be doing the same with all of my non essentials at the house before surgery.



    I'm not sure what I'm going to do with my dog yet! Thanks for reminding me!



    Here's hoping for good night sleeps!



    Cheers,

    Sherry

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