DIEP 2013
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4 am and I'm still up! All this talk of insomnia.
Funny thing is, I fall asleep while watching TV on the couch. When I get to bed, no such luck. So, tonight I laid in bed from 10 -1:45 am. I watched movies, tv shows, read boring books, then turned off the TV and out with the lights. I just laid there. Eyes closed, no lights, no noise, comfortable. 2 hrs. No go. So, here I sit on the computer, AGAIN, in the middle of the night.
NOTHING IS WORKING. I'm like a baby with my night/day mixed up.
I do have an added issue tonight with my dog of 10 yrs spending the night, unexpectedly, at the Vet hospital with distended stomach. It's a long story. I"ll update tomorrow. (later today). I am now going to go try to lay down again.
Sleep deprivation it taking it's toll. I cried tonight when I laid in bed.
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Bless you Shechirple! And all you ladies struggling with sleep. It is certainly one of the most difficult SE or issue I have had to deal with. Keep working with doc on it. I went so far as having a sleep study....My only issue on the study was getting to sleep. So it didn't tell me anything I didn't know....just ruled out anything medical. It's ALL the radio stations in my head lol! So I employ the relaxation techniques and meditation techniques and it works about half the time.....otherwise 1/2 mg Ativan.
I had two years to think about this surgery. I read many blogs, books, medical journals and grilled all my medical professionals....I KNEW what to expect. I knew it was going to be rough mentally taking a body that, after two years, was FINALLY feeling strong again and put it through surgery...again. I planned and prepped and had everything in place to make this all as easy as possible for EVERYBODY. I knew this surgery was not about making pretty breasts...it was about moving the tissue and making it live. I got what I planned on and knew was coming. And I have the best possible support system in the wide, wide world and am at want for nothing.
Yet still, last night, I sat and cried, too. Is there a 3 week break point? Do we just always want what we can't have? I want to go to work (knowing I would last about 3 hours lol), I want to ride my bike and run my trails, I want to wear the pretty bras and smaller pants I was promised, I want even breasts--- this SWOLLEN new one is getting as disturbing as my flat chest was for last 18 months. I want to not be compressed in any garment of any sort. I want to go 30 days without any sort of medical appointment.
In my naivete immediately after dx (not knowing I was stage IIIB yet....not knowing I had a year of Herceptin, chemo, mx, rads and a basketful of SEs ahead of me) I said ok, cancer can have this summer from me (2011) but that is all it gets. Here we are on our 3rd summer
Don't get me wrong....I understand without question how damned fortunate I am to be here complaining about my relatively minor issues. It could've turned on a dime for a while there. I am still totally in the game and grateful for it. I just want to work and play HARDER! NOW!
Ok...3 week breakdown complete. Time to shower. Will tackle the pile of mail and paperwork from the last 30 days....but I am doing it OUTSIDE!!! They cannot keep me inside!!!
Check up tomorrow...hopefully drains out....maybe that's my problem...I've gone "drain crazy".... -
Aww Bailey,,,,,sending big hugs....I'm betting everyone here, and those who "read without posting" can identify very closely with your feelings. We all go into this with a "naive" mindset, and bc seems to hijack our plans and timetables without remorse. We are humans, and you can't appreciate what you have, without sometimes "missing" what you had. I bet once those f***ing drains come out, it will make a HUGE difference for you. They just keep screaming "patient - unhealed - surgery" when they are still attached to you. They serve a purpose, but it is wonderful when they are gone.
Sleep.....wow.....such a topic for so many of us.....no "perfect" solution either!!!!
Kuka....how's that knee?????? ONCE YOU ARE OVER THE ACUTE PHASE......maybe try wearing one of those elastic knee supports when you GRADUALLY return to exercise?????
Diana Gabaldon books......addictive but yep, you really need to start from the beginning. I haven't seen another one for awhile, and the last one certainly ended (like the others) on a cliff-hanger!!!!
Anyone read "Left Neglected".....well written, sad and funny all rolled into one. It's the story of a young woman recovering from a brain injury. Especially anyone with a health/rehab background would "get it". The same author also wrote "Still Alice"....about early Alzheimers.....I found that one more depressing. So probably not a good suggestion. Love the Hamish McBeth ones.....Just finished a book (can't remember the exact title) about a guy who rides his bike (sbelizabeth type of bike) across Siberia in the winter....now there's a challenge for you!!!!
Thinking of jakig and Janet.....hugs going out to all.
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SheChirple, the sleep psychologist I visited told me that the fact that I COULD sleep somewhere other than my own bed meant that I had mentally assigned my bed the role of a battlefield. When my DH and I went to Ireland (a magical trip!) I slept like a baby leprechaun. And like you, I can fall asleep on the sofa, in the car, and at the movies. Re-training of the brain is necessary to stop associating the bed with the struggle--telling ourselves "I'm in my bed and I can't sleep!" I, too, have lain in bed and cried out of frustration and despair at my sleeplessness, and later, out of fear that cancer would take my life. My heart goes out to you.
Bailey, this is the place to go when you need to break down a little. I sure know where you're coming from. Right after my initial biopsy, we all thought my cancer was a little tic-tac and had no idea we'd find node-positive disease needing a complete axillary dissection (with all the joy that brings!). You will get through this. I'm two month out from my DIEP and although both girls need quite a bit more surgery, it's so nice to wear a bra with no silicone and be rid of the slashed, lumpy, painful, mangled-looking mastectomy scar. Hang in there.
Happy Thursday, everyone! Katy
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Good luck to the girls up this week, looking forward to hearing from you on the other side, enjoy your sleep
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Nihahi, my knee is still the same. Swollen and hurting:(. I've been taking ibuprofen and icing it. Last night I did the elliptical for 40 minutes. It didn't hurt at all, but I was feeling it this morning. I'm hoping it starts getting better so I don't have to go to the doctor.
Bailey, complain all you want. I've done it many times and I'm one of the lucky ones that have have it easier with no chemo or radio.
My 3 year old is already driving me crazy, so pray for me that I survive today! -
Rock-a-bye Janet, in the O.R.
BC Org sisters wait from afar
When you’re awake, and all squared away--
Victoria’s Secret, outa my way!
(Praying for you today, Janet! See you on the other side!)
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Kuka, kuka, kuka.........40 minutes!!!!!! I'm guessing it wasn't low resistance or low pace/incline either....HMmmmm......MIght I suggest you need to DIAL IT BACK!!!!!!!!! How about 10 minutes at a time, then ice, then see how it feels......maybe try another 10 later in the day????????? Someone needs to hide your energy pills!!!!!
Sorry, can't help you with the 3 yearold, want to trade for a 23 yearold who has boxes of crap to sort through, and likely won't be up until noon??????
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bailey / sbelizabeth...just ((HUGS)) thanks. It's so nice to come here where people understand.
I never thought about the bed as a battleground. Hmmm...I'll give that some thought and see what I can do with it.
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Wow! sbelizabeth and bailey it is so comforting to read your posts. It makes me feel "normal". I had the tic-tac mindset that has been blown away. You think you are doing well and that little meltdown lets me know I have to depend on that higher power.
Prayers for everyone having surgery today!
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Just a thought to all the ladies having trouble sleeping... If you ca sleep on the couch / recliner, why not stay there for a few nights to catch up on much needed sleep. Or maybe trying moving the pillows to the foot of the bed so you sleep facing a different direction. I had alot of trouble sleeping as a kid and my mom tried all sorts of tricks and these worked for me. Just something to try...
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Bailey - I share the frustration. I accepted that BC would get summer 2012. I explained to my husband that this could be a two year process [even as I hoped in my head that it may onlybe one]. I cried buckets when my RADS got delayed two weeks which meant I could not finish before Christmas which meant BC was messing up my normal Christmas plans because I had to schedule RADS in there. Everything with this disease just seems to be a major time suck.
I was a very healthy person. Now I have a medical team that can mostly be summarized in letters...GP, MO, BS, PS, RO, PT, LET, opthamologist [needed after surgical complications when I had the TEs removed], and a great counselor that I haven't seen in awhile. It may be time again. I just want to go outside and pull weeds and plant and walk without being exhausted.
When I was diagnosed, one mom at my kids school explained to me that her neighbor had just gone through BC and it went very smoothly. It was just a speed bump to be gotten over. At the time I was a bit appalled that she was so nonchalant. I understand now, that she was clearly not one of her neighbor's people. She may have brought her a meal or run an errand or two for her, but she was not this woman's PERSON. She has no clue what her neighbor went through. We can't possibly share all of the hurt with every person we meet. We share with our people....and here. I guess you are all my people.
So, this summer, I am healing from this surgery and hoping that the scars that are so pronounced in the area where I would really like a little cleavage will fade or be correctable. But, after seven months of having a hot mess on my chest, I am glad to have something that resembles boobs again. My DD is going through puberty and I can't help but think it is easier to grow boobs the natural way. And this summer, I am growing hair. I am tired of growing it out already but, after the 2012 summer of bald, I am glad to have hair.
My neighbor walks me almost nightly. I am accepting that there are more weeds and fewer plants in my garden than I want. I accept that my house is messier and that my children have a far less structured environment because I am just holding things together. I accept, and after reading this thread, am extremely grateful that I am sleeping too much because sleep is good for healing.
Jakig - hope you are doing well!
Janet - Good luck today! We are all thinking of you!
I am guessing that there really is a three week funk that takes over for at least a bit. I am tired of being tired. Cabin fever...?
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DH was home for lunch and I told him I want to go for a ride in the car after work. I want to go down some of our local natural beauty roads, roll down the window and stick my head out (yes like a dog!) so I can feel some speed and wind in my face. Maybe that will make me feel better lol! I wonder if my legs will just start peddling....like the dog's legs start scratching when you scratch in just the right place? Ha!
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Nice poetry sbelizabeth....but I heard it in my head as a rap instead of a lullaby....must be the teenaged influence in my life!
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As my DH says "Your mind can be your best friend or your worst enemy. It is up to you to choose which it will be." This applies to sleep, pain, anxiety, etc. I try to remind myself of this every day so I can make a wise choice. Right now you are all right in the middle of this really bad stuff. One day, not tomorrow, but maybe in 5 years or so this will all seem like a blip in your life. You will reflect that it really went rather smoothly and so very many of the same things that are a PITA now will come out as funny stories. Use laughter. Find the fun and the funny. It really can make all of this much better (not saying good, but better).
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Marty, you are a wise woman with a wise DH indeed! On Tuesday I had lunch with two bc survivors. One of them had a BMX 6 years ago, and had chosen no recon at the time. Now she is beginning to consider it - that was the reason for the get together, because the other friend and I both had DIEP in the last 6 months, and she wanted to talk to us. What a lovely afternoon! We laughed, joked, cried a little, and talked the hind leg off a donkey as we compared and shared our bc ordeals with each other. There was a hilarious show and tell too, and a close-up comparing of battle scars . . . she was absolutely blown away by what PS's can do these days. The party went on till 4. Such a positive experience. Bc brought us together, yes, but it did not break us and does not define us. It made us stronger instead. We are now going to have lunch every few weeks to help our friend with her decision re recon, and to support her through this. She will be meeting with various surgeons in the next little while, and it will be an interesting journey.
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I love your DH and his wise words, and I love you too for sharing them with us. You are both absolutely right. I find myself doing a little better everyday with trying to have a better attitude about my situation and breast cancer.
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You crack me up, Bailey. I hope you get to go on your car ride tonight. And, now I am going to rub my dog's belly and watch her little leg go back and forth.
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Liefie -
That's great that you can help a survivor complete the transition and just finally be over it. I personally am adamant about recon being 43 - I want my normalcy back. I can handle a few scars, but lets face it - being lopsided is a daily reminder of cancer. I don't want it. My MIL tried to talk me out of it yesterday because of the additional surgery / pain, etc - I told her - I need to be whole again as best I can - and if that means more surgery, I'm fine with it. This sucks, but I'm in it for the long haul. I will confess after days of discomfort, I want my fricken TE out NOW. Considered saying to hell with it - I'm done - but I'm not much for quitting - especially on myself so I had a pity party for a minute then got over it. It's such a LONG process, with treatments in between MX and Free Flap it gives me time to reconsider - which I don't like. I have leaned on those around me who have gone through BC - which unfortunately is a long list - and most have opted for recon. I just want to be me again - that's all...
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Dyvgirl, you have summed up precisely why I had DIEP surgery. That TE sat on my breast for 15 months, and it was time to get rid of it, and feel like me again just like you said. I am exactly 4 weeks out from surgery today, my new breast looks good, and I feel fantastic. You will too, dear Dyvgirl! Lean on those survivor friends - that's what friends are there for.
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Bailey- you said it girl! Thoughts I think almost all of us have had! And, love the reference to the drain pain!!! 3 weeks brings me the weepies no matter what. For me, it's part of the process but your thoughts most certainly have been resident in my mind along the way as well.
You just said it a lot better than I could have.
I also think there is something to do with our surgeries and sleep issues. I was one who RARELY ever missed sleeping through the night - falling asleep as soon as I hit the pillow. I do remember rolling into my right side, and then out like a light- so thought has occurred to me that perhaps it's the back sleeping that is the issue? Don't know, but sounds like its more than just a few of us with problems staying asleep all night. -
Attitude problem made better with removal of my last drain. Drain freeeeeeeeeeeeee!
Bailey - hope and pray you get rid of drain soon! -
Oh so happy for you Lynda!!!! What a relief, eh? No more "drain crazy" woot woot!
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dyvgirl, don't you ever give up on what you want. It's your life, it's your body, and if you want a whole body, then that's what you should have. Your MIL probably means well, like so many do that say stupid stuff. It's hard, but you have to let it roll off your back. For the first few months I took everything everybody said to heart, and even lost a good friendship over it. Who knows, she and I might mend the fence one day, but for now I am thinking positive thoughts about "my" future, not my friends, neighbors, MIL, etc. You stay the course, and do what you want for yourself.
Stay strong, but have a pity party every once in a while if you want.
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Okay, I tried to post a pic, but didn't work.
DVYGRL - after all I have been through in the last two years, even with my pity party last night, there is not a single decision I made that I would change. Not saying I would do it all over again and sure hope I never have to, but I would not change any of the treatment decisions that I made. What is more, I have never considered my reconstruction an elective surgery....to me it is one of the treatments I required for my breast cancer and as a result of some of the other treatments I chose. Nobody else has to live in your body or your head except you. Be strong.
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Goldie, weren't you going this week to see your ps? Wondering if he answered all of your questions and made it a little easier for you to decide.
Bailey, I'm laughing so hard. I'm picturing a woman riding in a car with her head out of the window and her tongue sticking out, lol
Most likely going to care now after my DH gets home and get my knee checked out. I'm having to take ibuprofen every six hours and still in pain😞. They're probably not going to do anything, but maybe they'll put me on bed rest and I can spend the weekend in bed watching movies, hehehe😄 -
Lyndamarie, I stole your paragraph about the mom at school who was so nonchalant about your breast cancer. I sent it to my bestfriend (giving you credit, of course) and thanked her for being my "Person." That one paragraph summed up so much for me as far as the way people react to my situation. I truly believe, other than you guys, that I have two people in my life who get it, my DH, and my bestfriend. Even some immediate family don't get it. I have a neighbor who has been through it, and said to call her anytime, but she is whole and well now, and she is not always there when I need her. Not her fault, just life.
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Kuka, I see him Monday. I did postpone/cancel the CAT scan of my abdomen for tomorrow since my current PS delayed my surgery date, because if I go with the other doc he is wanting that test done at his hospital. Which make sense. I am so sorry about your knee. Maybe it's your bodies way of making you slow down, and heal. Is your knee swollen? Gee, I thought it was just simple shin splints bugging you. I really hope it's nothing serious with your knee.
I keep thinking I am all better, and then I got up today and started cleaning house. After about 2 hours I was done in. Getting complete stamina and ROM back takes a while. What is really cute though is my DH. He is so glad I am doing housework again. I never heard anybody complain the way he did scrubbing a tub, or a floor. You would have thought I was actually torturing him. BTW...housework is one of the best ways to get ROM back. I didn't appreciate every muscle in our upper body that get's used to dust, scrub, fold clothes, etc. They should incorporate it into physcial therapy.
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Goldie...I'm doing PT twice a week for my shoulder and I'm picturing my therapist following me around the house saying "Dust up there! Shake that rug!" Not going to happen, unless she pitches in and helps!
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