DIEP 2013
Comments
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Hey...thinking of TypewriterJenny today! Hope you are healing well! You've been quiet on the board for a few weeks....hugs, sister!
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9/?/13 tina66
9/3/13 moviemaniac (Stage 2, double Diep)
9/4/13 FireDragon11 (BMX with Diep)
9/4/13 klanders (Stage 2a) NOLA
9/4/13 MAPBB (bmx with Diep) NOLA
9/5/13 goodie (Stage 2) Johns Hopkins
9/5/13 annm1020 (Delayed double Diep) NYUThis week's ladies.....praying they will sail through their surgeries, heal gently, and avoid the recent round of potholes.
Welcome to the newest members of the most extraordinary, courageous, honest and mindblowingly wonderful group of women ever to walk the planet!!!!! This IS an incredible journey, relatively "physically easy" for some, unbelievably hard for others, and we are all here for each other. Looking at our list, I believe many of the women who have "dropped off", and there are lots of them, have had the "easier" time of it....and moved on. People usually don't persist about things that go well. So I guess I'm trying to say, the "hard" journeys are likely in the minority, and I truly bow to the courage of you on the hard road, for sticking with the thread, sharing your fears and tears, as it helps so many others through the tough stuff. Also makes me so grateful for people like marty...who stick around to offer so much support and calm advice.
Spent the day yesterday hiking, and I had so many of you crammed into my pack.Hope you enjoyed the beautiful scenery and lunch at an alpine lake. I truly hope this week brings healing (physically and emotionally) to everyone.
kuka....you need to let things heal....I had my real boob lifted during my surgery....was NOT happy with how it looked afterwards, I was pretty mad at myself for asking to have it done....nipple pointing in the wrong direction and flat looking across the crease (what little crease there was)...now it looks soooo much better, just what my hopes were for it. Swelling is a sneaky thing...and takes time to fully sort itself out.
Bailey....I saw a couple cars with Michigan plates on yesterday....made me think of you. Hope the family outing has been wonderful.
movie....hang tough, girl....thinking of you!
Cherrie....I had another thought about your shoulder "thing"! You had so much stress going on recently about the mri "spot", I bet you had muscle tightness going on beyond your "physical awareness", and muscles rarely relax in an orderly way. Your shoulder pain now could be the result of that. Have you considered trying a massage? Works absolute wonders for me!
Hugs going out to everyone......we are here for you all, try to see the progress from the days of dealing with cancer, to the present day of healing from surgeries....have good days.
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SBE, I can't believe you were out on your bike yesterday. It takes me longer than a few days to get over anesthesia. Good for you. I truly believe that your bike riding through all you treatment, rads, chemo, etc. has no doubt helped you heal like a champ. They should use you as a example of what can be done vs. what shouldn't be done. Positive attitude. combined with positive physical activity. equals positive outcome. I am sure of it. You have always taken care of you body, and it took care of you when you needed it to.
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Yesterday....fyi....the chipmunk is a special "treat" for movie!!!!
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Nihahi,
What a beautiful day, boy do I look forward to getting back out there and hiking again
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Bailey,
There is great program for walk/run that you can download on a smart phone, it is called c5kfree or c10kfree or c25kfree depending on how far you want to run.
It sure helped me get back into shape between my stage 1 and stage 2, I look forward to getting back once I heal up from stage 2.
Hope everyone is enjoying their labor/labour day) -
Deb, the "necrotic" areas are probably just the scabby areas that have healing tissue underneath. It's not like the photos you see of people with frostbite and their toes/fingers are black and dead. The scabs, or "eschar," as the medical world calls it, is just a dark crust that lies over the tissue that's healing slowly from the bottom up. My PS had me treat my small spot with silvadene, an antibiotic cream, and daily dressing changes. It healed well.
Jerry's home today for the holiday and we have pretty much nothing that needs doing besides picking a few tomato worms off the plants, so I'm going to bask in the air conditioning and find a Netflix something. Prayers and healing thoughts to our sisters who are healing, and cheers for those looking forward to their OR dates! Katy
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Good luck to all of the women going forward this week! I wish you all the success in the world! You will be in my thoughts and prayers!
Sherry -
mrtw - my procedure (stage 2a) will be at Johns Hopkins (as with all my treatments and doctors). I really love all of the staff there! I went to Annapolis first then got my second opinion at Hopkins and I knew that was the right fit for me. PM me if you want any details.
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So depressed!
Had DIEP a week ago. Woke up with only one reconstructed breast.
I had originally (4/2013) opted for implants, couldn't stand the expander s or having the implants under my muscles.
Found out about DIEP and told the doctor I want the expander out along with the temporary silicone implants.
When I woke up 15 hours in surgery, he said my artery in my chest kept shrinking. He said it seemed like it was irradiated and there was scare tissue around it. He said he got it to work 5 times for 20 minutes, then it would fail. So he gave up.
The 1st thing he suggested was placing another expander over that breast with silicone implant!?!?!? I just had him take it out!!
I feel like screaming. I don't know how much more of this I can take. -
Grace writer, how terrible for you! To go through so much and not get the promised and desired result is devastating. I don't know of any solution for you but there are very knowledgeable women here who will have good advice for you. In the meantime, sending gentle hugs.
Sbelizabeth, I hope you are correct with your descriptions. I've been thinking that the scabby black tissue has died. But I think you are saying that it may just be a scab with slow healing tissue underneath. -
Grace, I am so sorry. What a huge disappointment. I can't even imagine. I would take time to heal, and then start doing some research. There is more than just one vessel that can be used, and there are other opinions to be gotten. I don't know where you had your surgery, but if you are willing to travel there are a few miracle workers scattered around the country who might have a different approach to your recon. It's not over till it's over.....
I wish you the best outcome no matter which direction you take, and I know other's will chime in with some words of wisdom.
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Grace writer, I too am a Uni and woke up with no breast (was told the vein was not healthy enough to make the transfer), I was as depressed as I have ever been in my life, that was November of last year.
I made an appt in January for a consult with dr Della Croce in Nola and had my hip flap surgery in April, and stage 2 just 2 weeks ago.
I explain it to people like "humpty dumpty is put back together"
What a difference 1 year makes...
Please know that you have found the BEST place for support and information that is out there, know that there are people here that love you and are sending you lots of healing energy, and there is light around the corner!!!
Lots of healing hugs being sent your way 😘 -
Grace writer, I am so sorry! I am sending you giant (((hugs))), love and prayers! I am encouraged for you by what Marcy47 wrote. From what I have read, NOLA has lots of trucks up their sleeves to give a woman a new breast even after failed surgeries. Whatever you decide will be best for you, but take your time. We are here for you as long as it takes, rant, cry, whatever you need.
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Just finished a hot, 8.4 mile bike ride with hubs! First one all summer! One scraped knee and bruised hip later, I feel healthy and strong. Just have to figure out how to get off the darn thing....
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YAY, Jeannie! Way to go! That's quite a distance for your first ride all summer, and just five or six weeks after your DIEP. What's up with the scraped knee and bruised hip--did you crash getting off?!
I'm laughing WITH you...
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Jeannie! Way to go!
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Yes, Katy, I crashed getting off! One minute I was standing, the next I was tangled up in my bike. Klutz! We have some great trails (paved) in the country or along Lake Washington. Today's country trail is 30 miles. I have a street bike. Maybe Lake WA next time.
Thanks, Tammy T! -
Congrats but take it slow!!! No more ochies!
My hubby's work got a collection up for me and my family!!! $2,000!!! Was so nice!! Got some bills paid and school supplies!!xoxo
Having some BBQ tonight! Have a good one ladies! -
Grace- So sorry that happened to you! I hope you find an option that you are comfortable with.
Jeannie- That is awesome! Keep on truckin! :-)
Good luck to the new ladies this week and the stage two girls! I am still waiting to hear when my stage two will be. -
goldie I forgot to tell you that I watched that video you posted. The beginning is hysterical! Honestly I wish there was more of just that. But it does have a good message. I saved the link and I think I will post it on my facebook in October for BC awareness month.
kuka, thanks for sharing about your stage 2. I have really been worried about the lipo hurting, and hearing you say that it did not hurt is very reassuring.
Janet you are not alone. I also thought that this would be no big deal. Despite the many many posts here of women who have been down and out for so long after surgery, and have had to have so many revisions, I really thought I was different, that by week 2-3 I'd be running around like normal. HA! Ignorance is bliss! Just as well or I might have been too afraid to do it.
2timer/Suzanne - congrats on getting through surgery and HOORAY for negative nodes! Great news! The drains are a pain indeed. Hopefully you won't need to keep them very long. This surgery is rough! but you can do it. I hope you are taking care of yourself and having minimal discomfort.
marty/sbelizabeth - so where does one get these rub on nipples? I am getting curious now.
sweetpickle I love what you said about feeling like a girl again. I feel so much better about myself, I feel feminine and pretty again. I like that I can wear my normal shirts again and not have to worry about not having normal cleavage. I feel better about myself now than I have in a long time. I did not realize I felt so bad about myself, until I felt better. It is really amazing.
Run Bailey, run!
Marty - superwoman complex - yes that is it exactly! I love it!
nihahi - beautiful pictures! The chipmunk is adorable. The water is amazingly blue, it is almost unreal.
gracewriter, I am so sorry for what you have gone through. That is just heartbreaking. I hope you are healing well physically. The emotional toll will probably take longer. Now is a time for self-care of the soul.
Jeannie, holy cow, over eight miles! I am in awe!!!
Tracy that is so sweet of your husband's workplace. I hate having had cancer but one positive thing is that it does reveal how many wonderful, caring people there are out there.
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Tracy....that is so awesome I got chills...So happy for you...people are good.
Love your chipmunk pic and Sbel' s nature sighting lol. We saw nature this weekend, too. We were HOPING to see a moose, but no luck. We saw two porcupine...belly up on the side of the road. And, most unfortunately, a young black bear that had just been hit
The people appeared to be ok. The U.P. of MI is mostly two lane road....all we could figure was it was on the road and because of oncoming traffic there was no where to go. It made us all sad.
Grace...there are no words for what you have been through. I am so sorry. I have to say that right now imho you have healing to do and figuring out what to do next can wait. I am glad you found us, though. This is a great group of women. We got your back, sister. Hugs.
Prayers for the large class of flappers in surgery this week!
For those in varying degrees of healing...Prayers for you, too!
Jeannie....I once fell under my bike while trying to put it on the rack.....duhhhh! Hope your injury is minor -
I would like to thank everyone for responding. Where or what
is NOLA? -
Grace NOLA stands for New Orleans LA, the docs there are on this website http://www.breastcenter.com/. There is a thread here called NOLA in September with more info. Several of the regular posters here on diep 2013 are NOLA patients.
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Grace - I am a NOLA girl. My doctor is Marga Massey. She preformed my Stage 1 with Dr. Scott Sullivan with the group Bailey mentioned. When you are in trouble, that is the place to go. They have been doing this surgery for many years and only preform free flap procedures. There are several options beyond DIEP. I hope you will look at their website and give them a call. This is doable with a great outcome.
Christina - www.rubonnipples.com. My dilemna is with creating headlights that need to be dimmed. Because I had implants for a great many years, my original PS used a strange insert to create nipples. I always likened it to a small suction cup. Dr. M and Dr. S told me they had never seen anything like it. As my implants shifted from scar tissue, I ended up with one headlight pointing straight ahead and one going off to the left. It was rather odd looking, but then so were the implants.
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Jeannie, I have crashed my bike so many times I've stopped counting. I don't ride the way I used to, though, all gonzo and balls to the wall; I got really tired of being all banged up--"a ride without a little blood means you're not trying hard enough" used to be my philosophy. But one of the best crashes was when I was learning to ride clipless, where you wear special shoes that clip into cleats on your pedals. I braked for a red light, forgot to clip out, and with my feet firmly attched to my pedals, just toppled over like an idiot.
Bailey, welcome back from the Upper Peninsula! My son and his wife once went dogsledding there. We've been to Mackinac Island but no further north than there. It was sure pretty.
Tracy, what a sweet thing for your hubster's work buddies to do. Even with great insurance, the costs of treatment are high, not including wasted vacation time and buying clothes that fit and hide what's going on underneath. There are good people in the world.
Nihahi, fabulous photos! I DO have a pic of yesterday's reptile, but I'll spare you. And thanks, Goldie, for the bike kudos--but it's all what you're used to, and I'm so used to riding my bike it's easier than walking. And here's Bailey going all marathoner on us--go, Bailey, go!
Jerry and I had a field trip to Home Depot and bought a UV flashlight. We're going tomato worm hunting when it gets dark.
Movie...big day tomorrow. You're in my prayers. Be sure to check in when you can get your eyeballs moving in the same direction.
Drain comes out tomorrow morning, thank goodness! I keep forgetting it's there and accidentally yanking it...ouch! I almost had my son talked into taking it out but he insisted I get the OK from my PS first. Apparently it's bad form to show up at your first post-op visit with unauthorized missing hardware. I'm thinking I'll need at least another procedure to reduce the size of the twins a bit and lipo the bulge under my arm, but it's very early yet, and it may be mostly post-op swelling. The temporary nipple tattoos are here: http://cancervictory.com/products-page/product-category/temporary-nipple-tattoos/. A red sharpie marker is cheaper, but it might rub off on the bra!
Have a great evening, sisters--Katy
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Eight miles sounds like a lot but I could have gone farther! I didn't want to overdo it.
) We'll see how I feel tomorrow! I just have a scraped knee, bruise on hip and bruised ego. Shoulder appears to have been a stinger, pain one moment, gone the next. I don't feel quite so clumsy now, though---thanks, Bailey and Katy!
This will be no surprise to anyone but once again I was shocked by a non-bc friend. We were FB messaging as she lives in another state. She asked how I was and I told her. She is one of my closest friends and likes to hear the medical stuff. Her response? "In the long run it's what's inside that matters, anyway!" Gee, thanks for telling someone who has been slashed, poisoned, burned and made every effort to find some kind of new normal with reconstructed boobs that I shouldn't have bothered!!! I tried to explain but she didn't get it. I know she had the best of intentions and I told her that, but I am sad. That's why you friends here are so important!!! You get it when others won't. What a lonely place it would be without you! -
Oh Jeannie, I completely get it. I actually lost a very close friend because of BC. I was only about 5 weeks out from my bmx, and I was very depressed, and still in pain. My friend called (we talked almost everyday before bc), and we talked about everything else but me. I finally said, "aren't you going to ask how I am, you hardly ever call anymore." She said, "Oh, I figured we were well past that." Then she went on to say the most horrible thing, "what the hell do you need them for anyway. Mine just get in my way. I wish they were gone." I never wished a bad thing on another person in my life, but at that moment....
It sounds like your friend meant well. I don't think mine did. I now realize, thinking back over many incidents, that she wasn't really who she had pretended to be all along, a friend.
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Goldie, I'm sorry, that's rough. I hope my friend isn't afraid to talk to me now that I've "schooled" her! I've been getting so many nosy questions about my LE sleeves lately, which has irritated me, that I think her comment put me over the edge. Oh yeah, forgot "it's what inside that matters" when I have to wear my stinkin', hot sleeves....
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Thanks Jeannie, Janet, Klanders and Tracy for the info on what to have pre and post surgery. My sympathy to all those having post surgery complications. It's almost enough to make me run in the other direction, but I'm going forward...I'll keep reading your posts and wishing you all a quick and complete recovery and new boobs that you are ultimately happy with. I'll check back in closer to my surgery date. Nihahi, can you add me as October 1, at UCSF, bilaterial DIEP.
Also, does everyone have stage 2 revisions? How long after the initial surgery? Also, does everyone get expanded prior to DIEP? I want to just go in and have the mastectomy and DIEP without dealing with tissue expanders first. Anyone do this and happy with the result? Thanks.
Deb -
Jeannie
I wonder what people are thinking? If I am out, and I see somebody who obviously has some medical device on of some kind, etc....I just talk to them like there is nothing different, and if they feel they need to explain, fine. But, otherwise it is their story to tell, not mine to ask.
I think your friend will be fine. I don't think mine was ever capable of any kind of compassion, empathy, or sympathy. My husband never cared for her much, and he tried to explain that I shouldn't expect much of her when this happened. He was right. It's okay. I have very good friends who have stuck by me through all of this, and my wonderful family. All is well.
BC has taught me many things, and one of the most important is not to sweat the small stuff. She was small stuff.
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