DIEP 2013
Comments
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Movie, all those yoga poses that you describe are still hard for me too. Cannot hold them for long, and substitute some with easier poses. But we will get there. As they say in yoga, ' Listen to your body, never force anything.' Works for me.
Nihahi, you will love the yogalates. My obliques and tummy muscles are sore this morning. I like that, because I know that I've worked them. Don't know how I will do this morning - have a strength training class at 10.30.
Lahela, my DIEP breast had hard spots too. Now, more than 3 months out, I have only one hard spot remaining at the breastbone where an inch of rib was removed to get to the arteries. Don't know if that will ever go away, but I'm not going to get hung up on that.
Sbe, I will think about your request. Where to begin? Janet M has you off to a good start already.
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OK gals, have set a second revision to "even" out these cup sizes from the first DIEP & first revision. Plastic surg. says it appears I went up possibly 2 cup sizes on the one side, and one size on the other. He is confident he can even me out so most bras I won't be spilling over the top on one side -muffin-like!! Anyone else have good results with a revision of this sort? Am doing this in September, so still time to chicken out ! Any thoughts would be appreciated ...
Shelly
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SBE...I have one thing to say, and it has never left me through all this. I had a friend call me (she called often before I had bc, and less afterwards), and she started talking about all kinds of unimportant stuff, and I listened a long time. I finally said, "aren't you going to ask me how I am?" Now this is 5 weeks after my bmx, and she said, "I thought we were long past that!" Now, we can count her as very ignorant, or are there many many more of her out there? It is never over once you are a bc victim/survivor. No, we do not have to talk about it all the time, and you don't have to ask us how we are all the time, but other people need to know we are forever transformed, and next time it could be them, or somebody they love.
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Sbe-I LOVE what Janet said so eloquently......our "normal" has been forever altered.....there's no backing the truck up on this. I can add the example of my SIL, an RN, who is amazingly ignorant......I made mention of the fact that once a person gets a "CANCER" stamp on their forehead, no matter WHAT the treatment, the cancer is there, ALWAYS, in the back of your mind...........fear they didn't get it all, fear of recurrence, etc. her response? "Well, you mutilated your body, and you don't have cancer ". No words........no words.......
Just back from last Root Canal appt,. And three shots later, I am finished....at least with this tooth....
Heading off now to get two 6'Hinoki Cypress to throw into a couple of holes I dug in front........so much to do, and so LITTLE time......
Love to all you crazy, wonderful, amazing women......have good days (esp. Bluebird!)
XO -
Wow, sisters, I'm astonished at the depth of experience and philosophies here. I can certainly relate to the "no going back" thing. Thank you SO MUCH for sharing from your heart!
Keep the ideas coming, everyone! The podium will be so crowded in October with all of us up there, we'll be spilling off the stage!
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Movie, that SIL of yours is really too ignorant and insensitive for an RN. I have read on these very boards of women who were diagnosed with DCIS, Stage 0, who got mets years later, and progressed to Stage 4. Like you say, after going through this, we always have that little uncertainty, doubt, worry, fear. There are no guarantees, and we just have to learn to live with it, and enjoy life again in spite of that. We need all the moral support we can get, not this kind of condescending stupidity. Heaven forbid that she ever gets cancer - she will swallow every word.
Sbe, what bc woke me up to was the fact that for so many years my life was going by, and I was coasting along just taking everything, including my health, for granted. This disease forced me to face the fact for the very first time that there is an end to this life. It made me realize that I have to live in the 'now', that today is a gift to be savoured and enjoyed, because tomorrow everything may change dramatically again like it did that day before Christmas 2011 when I heard that I had two different cancers. I can honestly say that I'm a happier person now than before bc. Now I know what is really important, I easily recognize what is fluff, and what really matters. I don't live in the future anymore waiting for who-knows-what. Colours are brighter now, I see things clearer, and I am acutely aware of the beauty all around me. I enjoy exercise, prepare fresh, healthy food, focus on what lifts my spirit, laugh a lot, and take life one day at a time. I've been blessed with a second chance, feel so privileged, and I'm not going to waste it like I did before. Life is too good, and I am forever grateful for what I have learned. My life has certainly changed for the better, weird as it may sound.
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Wow, everyone's heart is pouring out. This is wonderful. SBE, you should probably write a book. I know we are all talking about how "we" feel, and that is very important, but what is also important is early detection. SBE, if you are talking to people who do not have breast cancer there really needs to be stories of how some of our cancer's were detected, or overlooked, or ignored, or found early because of good medical attention, or own due diligence, etc. Early detection is the key till there is a cure.
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Sharon, I believe you are right. If you go straight from your own beautiful breasts to a diep, you might be very disappointed in how they look, but if you live without a breast, or both breasts for a while, deal with expanders, scars, rads, burns, healing, hiding under oversized clothing, then you probably will appreciate you new diep breast much more. I know this is a little different, but I am being expanded, as most know, and today I wore a beloved sundress, and it looked okay. I wasn't quite sure, and waited for my husband to get home to reassure me that, yes, I could go out like that. In my mind even these horrible hard rocks on my chest are better than nothing at all. I can't imagine how happy I will be when I am done with all this, and get my foobs.
BTW..all yoga cd's were mailed today. Please give me a heads up that you get them. The lady at the post office said I had a wrong zip code on one, and she looked it up for me. I hope that was the only mistake I made.
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Congrats Tracy! I woke up in a panic this morning wondering if I'll have drains again. {{shudder}}
I like the water pik analogy. Hopefully this time tomorrow I'll be clean and fresh and healing fine this time.
They will also be taking out my port tomorrow, so today I had an iron infusion scheduled. Of course, the way my luck has been lately I had an allergic reaction to the iron. Luckily it was during the test dose. I was busy chatting with my nurse and suddenly it felt like a 200 lb rock was dropped on my chest. I stopped midsentence and said, I think I'm not okay. That was the last thing I remembered. My daughter who was with me said I turned bright red and they stopped the test and administered the "anti-venom" lol... The best thing was my doctor came and sat with me and told me how pretty my hair is looking now. ha..ha.. he was trying to distract me from passing out.
But all is well, just no iron for me. It's back to getting it the old fashioned way through food. (except liver!) I need one of you ladies with the magic recipe to make it for me before I will try it!
sbe, and more along the lines of there is no normal; I once asked my doctor when I would start to feel like myself again. He looked me square in the eyes and said, "you will never be you again." He must of seen my look of horror, but he went on to say, "you will be stronger, healthier, and the new you will not want to go back to what you were before. This will change you forever and it will be what you want to make of it." I think of this often and realize that this is just a "snapshot" of our time here on earth. We will look back at old pictures of ourselves and think, "Wow. I have come a long way baby!"
I think this is important for family members and spouses to understand as well. We will get through this, but we may not be the same person on the other side and that's ok.
TOWANDA!!! Keeping you all in my pockets tomorrow and I'll be fresh as a daisy. Third time's the charm! Love you ladies!!
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Bluebird-what a compassionate doctor. You were lucky.
Sbe- I had written a summary of my ideas and somehow I lost it. I hate that when it happens.
Most of what I said repeated what many have already mentioned.
I did write that it is vital to take some control by researching and educating yourself. That is how I found out about DIEP. Arm yourself with knowledge and you are more able to make decisions for yourself. Be your own best advocate during a time you feel such loss of control. It is an overwhelming time.
Also the new normal can be better. Proper exercise, nutrition, living in the moment, etc. just like Bluebirds doctor said.
When and where are you presenting. Will it be videotaped so we can see it. You are very brave. Wow! -
Bluebird, love what your doc said to you. He must be a wise man. It is exactly what I experience - stronger, healthier, don't want to go back to what I was before. It's almost like we have a clean page to write on. Also like your 'snapshot' idea - what a neat analogy. Best wishes to you for tomorrow!
Tracy, yay for losing the drain - feels so good, eh?
Goldie, hoping your new boobs will be forthcoming sooner rather than later. You are one patient, long-suffering warrior. I'm sure you looked smashing in that sundress.
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Sbe, I have lots of thoughts about what it means to be a breast cancer survivor. It means having to surrend all your trust into the hands of your medical team that they are providing the best treatment for you based on your statistics. It is about taking care of yourself, reaching out to others for help which is difficult for alot of people. It is also perhaps about seeing the best in people - some people that you never expect to be there - do something wonderful. It is finding out who your true friends are, people that shy away because they dont know what to say or how to deal with it...because it may happen to them.
It is about the relationships that change with family, friends, coworkers and perhaps even a spouse. Sometimes cancer brings a couple closer to together, other times it tears them apart.
Cancer can happen to anyone, we always think it happens to "other people", we are one of those other people. Cancer changes your life in many ways, sometimes positive and other times negative. You can talk about self esteem issues with loosing your hair, side effects from medication, surgeries and treatments (chemo, radiation, being put in menopause before your time). Impact on women with young children.
Financial impact due to cost of treatment.
Fear of reoccurance, checkups, trying to put that "elephant" in the room into a place where you dont let it overtake your life. Learning to live that "new normal", baby steps, one day at a time.
Talking to people that have cancer, we are not fragile eggs that break...we are just like everyone else except for we have a disease that doesnt have a cure. Getting rid of the notion that we are cured of cancer "after 5 years"....this is one of the biggest pet peeves.
Importance of getting mamograms especially if family history. Knowing what to look for in your bodies, learning how to do self breast exams. Women should be getting their first mamogram before age 50, I cant tell you the number of people that say this...I want to spit...literally! I was diagnosed at age 41, my youngest sister 42, my oldest sister just turned 50. I know many breast cancer survivors (15 of them that I see once a year)...youngest was 28 at diagnosis, oldest was in late 60's.
I could go on forever...hopefully this is a good start for you.
Bluebird - thinking positive healing thoughts for you tomorrow:)
Michele
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nahahi - I agree, I think my dry skin would do better with something more than aloe at this point, but I am reluctant to use anything else until my incisions are completely closed.
ssla, how reassuring to know that our breasts will "soften" before too long.
Tracy - so happy for you that you got rid of Asshole and are loving your big boobs!!! You are a riot!!! LOL
sbelizabeth, wow what a task, to speak to a group like that! That is amazing! I have no idea of what to say but fortunately lots of ladies here have great ideas.
Jeannie you have such a good outlook.
liefie I loved your post about living in the now, and savoring life. The Christmas after chemo I was so happy to stand in line FOREVER at WalMart to purchase my family's Christmas presents. Thinking about Christmas during chemo would help cheer me up if I felt blue. I was so grateful to have the energy to stand in line, so grateful to be doing something nice for my family, instead of dealing with chemo/rads/surgery or whatever else.
bluebird you really are having a lovely streak of luck, aren't you? Your doctors sound very sweet. I just noticed you are from NJ. I am a Jersey girl, grew up in Sussex county, lived down the shore for a while, and then for a few years in the Princeton/Trenton area.
Again work went well today. I was so glad (again) to be doing normal things. I went to a meeting and a co-worker was very stressed and grumpy. I said, "Look, I've been watching the Today show and The Price is Right normally during this time for weeks now, and I've been really looking forward to being here at this meeting instead! So take a deep breath and relax, because I want to enjoy this and you are not going to spoil it!" It made her smile and relax a little bit.
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Impressive reading today....it feels to me, like we have discovered the "common ground" that has been so elusive in the procedures and protocols....sbe...you will be a wonderful representative of us all.
I agree completely with what has been offered so far....we can never "go back", it is a "new normal" and not necessarily a bad normal, but it will always be different. Others have phrased it better.
At this point, I'd like to add 2 other thoughts, I'm sure more will come later.
1. It is impossible to "unhear" the words "you have breast cancer". 22 years later.....I can quote the dr word for word as she said that to me. I can hear the tone of her voice, I can see her body language, facial expressions, gestures like it happened yesterday. I can "see" my husband's reaction..his head dropping to his chest, the sound of the air coming out of him, like he had exhaled every ounce of life inside of him. I can see his eyes when we looked at each other. I remember where I was sitting, where he was sitting, where the dr was standing.....which exam room we were in. My point is....to those doctors, nurses, whoever, that are the ones who "deliver" the diagnosis.....Take the care, take the time, call on your skill and compassion, to do this right. Do this difficult, life changing "announcement" the way you would want it done for your wife, your mother, your sister, your daughter. This moment, will stay with your patient and her family forever, and you only ever get one chance to get it "right" for each person.
2. Something that hasn't been mentioned yet, is how to "end" the treatments. Once a patient starts on the dx, sx, chemo, rad journey, it's like you've been swept up from everything familiar and put on the front lines of a terrifying battle, in a foreign land, with no preparation, no "prior experience" of "what's coming tomorrow", how you will feel, what it will do to you, but you know it is a battle you MUST win. So you fight, you do what you are told you must do, no matter how painful or devastating the consequences, you and your loved ones, are under the "direction" of strangers, who seem to have the information you need..what...when...how....how long...Then....you are done.........it's finished, the "stuff" you HAD to do, each day, each week,....is complete. You don't know, you will never know for sure, what the outcome of all the fighting will be. But it feels like you are left, on the side of the road, not really knowing where you are, which way to go, and told to "find your way home". It's like being pushed out of an airplane, without a parachute, but you are expected to land on your feet, and just walk away.....I wonder how many oncologists, nurses, families, friends, etc. realize the struggle that goes on when all the fighting is done.
Makes me thankful beyond words, for the ladies I have connected with on this thread. Bless you all.
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Oh, girlfriends...there are just no words. You have allowed me to think about things that I've pushed far, far away...or never let myself think about at all! My chin is all wet and my nose is drippy. Thank you, THANK YOU for opening your hearts for me. I don't know where I'll start, or how I'll weave all this together, but I'll do it for all of us.
If there are more "jewels" on your mind, or if you haven't had the opportunity to share yet, please let it keep flowing.
What a beautiful band of sisters.
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Sbe, I hope there is a webcast so we can all watch! When I think of cancer, it was such a shock to me that the first think I thought in the morning and the last think I thought at night was...."I have cancer." it was all-consuming at first. The fatigue was mental. Then, as I started meds and surgeries, the fatigue became physical. I was not prepared for how tired I am at times. After months have passed, it is no longer my every thought, but it still shocks me when I realize I am fighting cancer.
Love to all you Sisters! -
TOWANDA! (((((((x)))))))
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After I hear Towanda, have the urge to say "over and out".LOL
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Sbelizabeth: My base line thought is this: Breast Cancer is not all about pink ribbons and long walks. Breast Cancer is about being hit by a truck and facing our mortality, finding our true friends, and putting our faith in the medical community and God “ hand in hand” to deliver us from a disease we did nothing to deserve, and have little control over, that will change our lives forever, even though we may survive and may appear unscathed standing in front of a crowd in our Sunday best. The scars are deep and superficial at the same time. Don’t be fooled by my mask. Behind the mask I am me. I am a scared, weak woman who finds courage and strength only in others. That courage and strength is what keeps me going. The pink ribbons and long walks are community support and hope for the future. My future is every day.
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I have been offline for the past couple of days so i had a ton of reading to catch up on
Sbe- Good luck with your speaking engagement! If I were to share my experience with a mixed audience, I would want them to come away knowing exactly what Nahahi shared so perfectly!
Nahahi- You put into words what has been in my head, thank you for your eloquence!
Bluebird- speedy healing vibes being sent your way, I am sorry that you have to go through so much!
Goldie- Awesome, thanks! Ill let you know as soon as I get mine. I have been practicing that move you shared.
I know Im missing folks, hope all is well with our new sisters! -
Jubby: welcome . At 3 days I was just moving from ICU to regular ward in the hospital!
Goldie: no hero for rtw at 4 wks. I work at a desk. I’m the boss. (No pressure…lol) and can leave whenever I want. Depression is often situational and comes and goes. I know I have ups and downs, we all do. It’s not bipolar, it’s normal. Depression is to be expected following such as we have been through. It is when you can’t shake it off, or it lasts too long that it is really affecting your life, that is when you need help. I was under anesthesia for 12 ½ hrs. Did it take 12 weeks to get my energy back? Pretty much, yeah.
Sharon: YAY! I’m a few wks behind you, my surgery was 5/24. So, 100% healing is still ahead. I have a few incisions with open sores, but nothing deep. I want it all healed before I head to Las Vegas in September. That is my goal.
Cherrie: I’m having wine, too! Good thoughts and prayers…it’s nothing. Maybe scar tissue?
Janet: I’m more than 12 wks and occasionally find myself hunched when sitting, which I NEVER did before DIEP. I’m trying to be conscious of it. Airport security can be nice. I flew my third day back at work, 4 ½ wks after surgery. Our local airport, Ontario International, uses scanners where you usually have to put your arms up over your head and “assume the position”. I told them I don’t mind the scan but can’t put my arms up because of recent surgery. The let me hang them down by my sides. Nice.
HA – I’ve only ever had 2 mammograms in my life. Happy to never have another one. The first bruised me so bad I swore I would never have another. My BFF (Breast friend forever) convinced me I had to. So, it was #2 that found my cancer. Now, with DIEP, never again.
Bluebird: what a great note! Made my day and it wasn’t even addressed to me.
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nihahi: In my professional world I send a lot of personal Thank You's to people. I keep a stack of Thank You Notes in my desk drawer. I handwrite a little note, mention specifically what they did for me and how much it meant. Iknow how much it means to my employees.
When I left the hospital after each surgery, I sent such a note to EACH nurse who took care of me on the floor, EVERY person whose name I could gather during my stay. When I returned for one of my follow up visits after my BMX back in 2011, one of the nurses I had sent a note to saw me walking in the parking lot, ran up to me and threw her arms around me. She had been a nurse for more than 10 years and had NEVER received a personal thank you for anything. She remembered me.
So, I challenge each of you to send a personal note to someone to thank them for something they have done for you during your journey. It doesn't matter if it was last night, last month or 5 years ago. If you still remember it, it meant something to you and you should let them know. DO IT!!
On that note: THANK YOU! For each and every one of you who has posted in this thread, and on this website, THANK YOU for the support you have provided to me and others. It has made this journey possible to survive and thrive.
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Here's something. People tried to be so kind by saying, "You're so strong!" when I didn't feel strong at all. I was just doing what I was supposed to do. I didn't want to do it, didn't enjoy it, didn't feel strong doing it. In my case, any strength I felt came from God. I was silently shouting, behind my smile, "I'm not strong! I'm scared!" I know it's hard for people to know what to say. I'm not sure I have suggestions other than it was good to hear that people were praying for me, sending me cards and doing the practical things like rides and meals.
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tracy...forgot to add....CONGRATS on saying so long to a$$hole! It's a wonderful feeling, isn't it.
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Nihahi, your post about how we are told we have cancer hit a nerve. I had a mammogram and was called back for an ultrasound biopsy which I had had in past years sometimes. I recently had breast exams by both my Gyno and PCP and they felt nothing unusual. The ultrasound tech called the doc in and they suddenly were silent and somber. When I left the room, they said "good luck!" I was put in a room to make another appt. and was given a "goodie" bag full of bc stuff! By then I had figured out the news wasn't good, duh, but this was handled so poorly, I was seething. My next appt. at this breast center was with a nurse, not a doc, and she told me specifics of the cancer. I told her how badly this was handled!!! She looked surprised when I declined treatment at that hospital and went to the best one in the northwest. I really wish I had a different experience finding out I had breast cancer. On the plus side, that was way back in January of 2112! I have been through so much and I'm on the mend with new boobs.
Nihahi, to your second point, I saw my dear PCP during chemo and, while I could barely keep my head up and eyes open, he spent time with me talking about how I may feel when treatment is over and I am " set free." He is a cancer survivor (non-Hodgkins lymphoma) so he is so sympathetic and understanding. I am blessed to have him and his wise words.
I am really pooped tonight from keeping up with my family the past few days. So glad I was able to participate in everything and I'm cutting myself a break!
SheChirple, your thank you idea is so good! My nurses had to put up with a lot, with Wilbur and all.....
Sheri47 and 2timer, thinking of you and your turns tomorrow! You'll do great! Peaceful sleep and steady recovery to you. Sbel, your turn is around the corner! I hope all goes well!
Did anyone answer Shelly 56's question about reducing cup size during another revision in September? No experience with that yet.
Bluebird, we are all rooting for you and wanting a " clean" start for you!!! -
Yes!! Without drains I am counting on at least 5 hrs sleep in a row?!
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oh c'mon Tracy.....shoot for a bigger number....I'm predicting 6.2hours. Anybody else.....let's get this sleep number up there ladies!!!!!
shelly....I'm pretty sure I'm going to be asking for a "slight reduction" when I get my "tweak". My natural breast was lifted and slightly reduced at the time of my flap (they removed a small implant on that side, and I didn't want to be saggy and deflated). I love the size and shape of it....hoping for the gloob to be downsized to be a closer match.
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My flap was reduced at stage 2a when he repositioned it. PS will further reduce it just a little bit more by lipo when he does stage 2b in September. Then it should perfectly match my natural breast which was reduced & lifted during stage 2a.
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sharon....that's good to hear....thanks for sharing that.
sbe....I've reread your message....is your presentation going to be to bc veterans, other women, and healthcare professionals....or without the professionals?
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Going to my regular Internist tomorrow. Waiting to get in with a therapist at the breast clinic as been a trial. I give up. My doc has always been a good listener, and I don't want to say friend, since he is my doc, but I have been going to him for 30 years. He helped me through with some meds when my mom was dying, and I think he will help me find an antidepressant that will work. Heck, most of my friends get theirs from their gyno's. I think I will talk to him about cymbalta because of my back, and the depression. It's supposed to help both. I believe Christina mentioned that one, and I know somebody else who takes it, and it works for her too.
SBE...I tellin' ya. You could really write a book from everything written here today. Somebody should. It could just be a compilation of passages written by women with BC. Like the one Shechirple wrote today could stand alone, along with several others. It's been an inspirational day.
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