NOLA in September?
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4my4babies - sleep well this morning to awaken with a wonderful outlook! You will do great!
Anita - I am looking at the fitness channels on youtube for a yoga program to do at home. You might try there as they are free.
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Betsy and all --
Re: talking things over with spouse. Well, I didn't. I was so traumatized with the diagnosis, after just having seen my daughter through a year of BC and treatments and surgery, that I freaked. Researched and started going to cancer centers (health insurance covers all). After a debacle at Sloan-Kettering that was almost as traumatic for my husband as it was for me (he finally got a good look at what I had been going through with each of the centers (Roswell Park, Hopkins, Sloan-Kettering) and admitted to being relieved that he hadn't had to make the decision. He would have thought implants were fine. So, after I decided on my course of action, we had a glass of wine and I laid my reasons out to him. He was candid in saying it was my body and what I needed to do he would support. S-K went south for GAP, so I started looking at NOLA. Had I known that my insurance would have paid for the MX and reconstruction all at the same time, there would have been no intermediary -- I would have gone straight there. I admit that I thought they would be as cold as the rest of the centers until I watched a video with Dr. S and I realized (light bulbs going on all over the place!) that THEY GET IT!!! Showed up with a TE that was doggoned nearly a shouder pad it was so impacted from capsular contracture -- Dr. D. and I looked at the photo that they took when I went for Stage 1. It has been very scary as I have done most of this myself, alone, but after the chat my husband and I had, I knew he had my back.
I believe there is a sort of 'madness' that hits when the "C" word is spoken in disgnosis and behaviors that we normally would have engaged in just go out the window. It takes time to heal from the physical and even more for the emotional and mental. I am not sure we allow ourselves to even think of that whuile "in process" -- it is when we are taking some breaths finally and seeing the end of procedures that we start to look back. Not a bad thing, but shouldn't take away from living in the moment NOW. We have all learned the hard way that life and our time here are way too precious. Counseling is helping ... support of husband and friends even more.
FWIW this Thursday AM!
Maggie-1
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Kate-I live 3.5 hours from Chicago and will go there. I think my poor insurance (BCBS) pays more there. I am having my surgery at a new surgical center and staying across the street at an Extended Stay for $89/night. This is a discount for Dr. M's patients. It is an outpatient facility. At Advocate (overnight hospital in Chicago) there was a B & B nearby that would have worked. It was $149 but a nice breakfast everyday. I think Willy5 (Anita) had her surgery here.
4my4babies-we are all thinking of you today. Can't wait to hear from you on the other side.
I am worried about lipo after listening to you all. I still have love handles that I want gone. I also have extra fat under where the bra sits. (My torso) Maybe I will leave legs out of the picture and keep walking and hope that helps. My pre-op will probably be the morning of surgery.0 -
4my4babies, wishing you the best today!! You are in my thoughts and prayers and we all can't wait to hear from you on the other side. You have the best working on you
I finally got the nerve to call the center to at least express my concerns and I sent pictures to Jeanine yesterday. She e-mailed me back and told me she got them and she would call me later cause she was in clinic with the doctors. I told her there was NO RUSH what so ever and she came back and said that was great cause she really wanted to show the pics to Dr. D. before talking to me again. When she said that...my heart kind of sank and raced at the same time. Is that odd? It was the oddest feeling....Anyway, guess I'll see what they say today.
You ladies are the best and thanks for all the encouragement on Myfitnesspal. Since my hysterectomy 2 1/2 years ago, I have had the hardest time even shedding a pound and I have lost about 2 pounds this week.
Hugs to you all!!
Chelle
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You ladies truly inspire (and educate) me.
Has anyone been advised of any thing to do to hard spots that might be receiving inadequate blood supply to soften them?
Since I tend to be the worry wort and am so unsure of where I stand in my Stage 1 recovery AND the prep for Stage 2 in mid March, I have decided to make a trip to NOLA to get a check-up eval and to discuss Dr S's thoughts for what needs to be done during Stage 2. My sweet male friend has made it possible to fly there on Feb 6. Since this is during mardi gras, we will enjoy the city (with all it's craziness) a few days then come back to NC. I think, at least for myself, this pre, pre-op to outline the expectations and my individual course of action are a necessity for my very sanity. I can't stand the unknown (being very much a planner and a details person). Thank you BF for the use of your airline points!!!
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Thinking of you today 4my4babies! Can't wait to hear an update from you.
Paula...I would really like to do the same thing you are...have a consult before Stage 2. If you have the means and the time, there certainly isn't a drawback for going and getting a look. Hopefully it will help relieve some anxiety. I know such a consult would help me tremendously right now!
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Cherrie, I did have my 2a at Advocate. Also had my preop the day before at Dr M's office. If you have yours the day before, you can spend some time seeing the sites at Navy Pier. Her office is located right there. She may coordinate your preop with travel options. You should hear from Becky next week with the details and orders for preop labs.
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Paula_Kay, I am now 3 months out from Stage 2 and can use massage on the hard spots to soften them. The docs forbid any massage beforehand. I am going to PT and they are helping me with massage and stretching and it feels like it is helping.
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Paula... I found massage helped temporarily, but not long term. Stag eII manipulation does help, but as it softens, it may also shrink as the fat softens.. I went down for a pre-op pre-op in October for my stage IIb... It had been almost a year since I'd seen Dr D so it was easy for him to gauge what I needed. I just forewarn that Feb 6 is still kind of early and he can tell you what might be done, but you will still be swollen.
About underarm fat. I think the only thing to do with it is excise it. I had mine lipo'd at stage II and having it excised at IIb (and left side will be used for rotational flap. I have heard its a common complaint and I wonder why they don't just cut it out at stage II. Part of me thinks that it is fat that migrated there after stage I. Even my PIT is puffier.
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Good afternoon, Ladies.
BDavis, I know you've posted this before, but, when can we have therapy/massage after fat grafting to the breasts?
Also, Dr. Trahan removed the excess skin and fat from under my arms at Stage 2. It gave my breasts an even higher lift actually. I returned to work this week and everyone's noticing that the girls are sitting up.
TTay
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KKemp, we don't know each other, and the others have made great statements. Here's mine. I think you'd be nuts to pass up the best reconstruction in the world for implants. I've had implants. Yuk. You are so lucky to be right there in NOLA. And on the schedule! My take. Good luck with your decision.
Betsy, YES you are on the short list! And about the hubby. I decided on my own. I did then go on a campaign to win husband over to my way of thinking, which I did. I showed him pictures of different results, and gave him url of the center's website, and he and his Dad (a retired physician) poured over it. They determined it was a good place to go. HA!. I was going anyway. This is a very personal decision. Hope you are doing better about your process.
4My4!!!! Prayers and Angles watching over you!!!!
Jan 17 - 4my4babies - PBM and Stage 1 DIEP with Dr D., NOLA
Jan 30 - Pamela44 - Stage 2, NOLA.
Jan 30 - BDavis - Stage 2B, Dr. D., NOLA.
TTay, I thought that was you on MyFitnessPal!!! I've lost almost 3 pounds. YIPEE!!! It is really fun having all you girlies there in MFP! Betsy, we're hooked up!
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ttay.. I would ask the doctor, but I would leave them alone for 6 weeks or more. I don't know why I keep saying that amount of time, but that is the time I took off before lifting weights etc. so I am thinking that was the time frame they gave.
Bev... Yes, I got you. Thanks-
Everyone who responded. Thanks for chiming in on the sharing with the husband and getting input. I guess my biggest error was not really explaining it all even after I had decided. I know he takes issue with not being part of the decision, but I have tried to explain that this had to be MY choice. But I could have been better at explaining things. Perhaps I was waiting for what you had Bev, having the husband look at the website, or show interest. He didn't. That's just his personality I guess. I am always the one to do the research. I definitely get jealous reading about husbands stripping drains and washing hair etc. Mine didn't do that stuff or show any interest in understanding what I was going through. So it may have been hard for him to not contribute his opinion, but it was hard for me feeling like I was on my own.
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ttay, the Center told me to do no massage before 3 months out. This was for both Stage I and Stage II.
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When after Stage 2b do we get to not wear compressions garments and put on an underwire bra?
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Is there a Hope Lodge in Chicago? I had asked one time and they said no.
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Kate,
I checked the ACS web site and there is not a Hope Lodge in Chicago or anywhere near.
http://www.cancer.org/treatment/supportprogramsservices/hopelodge/index
I hope things work out and that affordable lodging comes up for you during your two weeks of LE therapy at Dr. M's office. Are you looking for lodging close to the outpatient surgery center or Dr. M's office? The Extended Stay that Cherrie suggested sounds very reasonable (especially for Chicago!), but still, paying $89 per night (not including taxes) for umpteen nights adds up fast. Maybe they will give you a quantity discount for so many nights? It's worth a try. Good Luck!
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Hi all, just catching up on all the posts. Chelle- Thanks for updating us about your son. I will continue to keep him in my prayers.
Bdavis- I wanted to comment about sharing with your husband. I feel like a lot of it has to do with being a strong spirited individual. Seeking out NOLA may not be the easy answer but one that each of us felt was the right decision for us. To me that requires a lot of strength and an independent decision with the support from loved ones.
Today I decided to make a change in my career and pursue a new path. I don't know if I could have done this, if I had not gone through everything last year. I just accepted a new position and will be leaving the HR world behind me and moving in Career Services with a local college. It will be closer to home and ready for a fresh start. Had to share with you all!
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I just told my husband this is where I was going. His first gut reaction was "No!, we are so close to Manhattan". Neither he nor I ever thought we would travel for medical care. However, once I told him all my reasons he came around. I did go to one DEIP doctor in NYC but he was not for me. My husband too, never looked at the website or looked at any research I did, he just took my word for it. (Which really means he is too busy with his work to relate on that level, but that is how it always has been.) Anyway he came with me and will come with me for stage 2 so I can't complain.
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Betsy, my husband was (is?) similar to yours. He was not one to research or read. He did not help with drains etc and really didn't look at my recon until I was well healed from stage 2. He was not attentive to me through chemo. BUT. He was attentive with our daughters (now 9 and 11). He did go with me to some appointments when I asked. I chose to ask him to come to the appts that were a big deal to me. I wanted him there so he could hear the info straight from the doctor and by having him there I wasn't shielding him from reality. His dad passed away from cancer so my cancer freaked him out for a long time. Hubs focused on the kids and work mostly, and made sure I had food I wanted. I made him go for the first part of stage 1, first chemo infusion and I made him go to one of my radiation treatments. I skipped having him come with me for Stage 2 because of his poor bedside manner! He wanted to come with me for 2b and I felt confident enough to take care of myself, so I let him. He really needed some time away from work as well.
Your topic prompted me to ask him if he felt involved with my cancer treatment. At first he said I never consider his opinions anyway, that I decided to do what I wanted to do. The more we discussed it the more he realized he did help me. True, I was going to do what I wanted to do. In the beginning, he told me I shouldn't be asking the doctors so many questions and just do what they told me. The more I dragged him along (especially to the second plastic surgeon, who knew how to talk to me as a cancer patient deciding on bilateral recon) the more comfortable he became with all my questioning. Hubs was hesitant about NOLA, but supported me, knowing I couldn't get what I wanted here. Once he met Dr Sullivan and Dr Stolier, he knew I was right.
I guess I'm rambling on that point. Generally my husband is not very decisive and not a risk taker; very shy. So I tend to venture on without him. I've gotten very tired of him rejecting my suggestions (and he says I reject his!) so I 'pick my battles.' I have to be specific when I ask for his help because I don't think he is an intuitive caregiver and I do tend to be quite independent.
Don't know if there was a point to revealing all this! But the treatment is hard on us as well as our significant others.0 -
I just wanted to say thanks for the responses about billing/financial stuff and how things went for all of you. I thought I was doing my due dilliagence but wasn't, I've done a little more and feel good about things. I think I needed something menial to be nervous about.
Anyway, my last day of chemo was yesterday. Yippee!
How long did people stay in the hospital for the first surgery? They say 3-4 nights but that just doesn't seem like long enough.
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kkemp - actually 3 - 4 nights works just fine as you are released to a local hotel. They do not want you to leave town til after your post op visit. Using my surgery as an example - Thursday was pre-op, Friday was surgery, Tuesday discharged from hospital, Thursday post op. I could have left on Friday, but planned my flight for Sunday just to be sure. I didn't want to fly until 10 days out, but goofed in my counting.
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Kemp, 3-4 nights seems to be the norm. A few of us, me included, stayed for 5. I had trouble keeping food down and clearing my head of meds. I was given a bit too much pain med for my tolerance and once we changed this I was good to go to the hotel. It was tough. I was a huge walker, went round and round the hospital halls but had to stop to be sick, then would resume walking. The nurses were so NICE; they did not know what to do with me.
I brought them a big box of Owyhee Chocolates (ID goodies) at my stage 2 to thank them. I delivered the candy the day before surgery (pre-op) so they could see me when I was not a walking zombie! I did not need much pain med for stage 2. Had surgery on a Thursday and was off pain meds by Monday. For me it is more about not getting panicky than actual pain.
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Kemp... I too was in the hospital for 5 nights. You stay as long as you need. I had a fever and so they kept me.
Pamela... Thanks for sharing. It is sounding more and more like most made the decision to go to NOLA on their own and then included their husbands. It makes me feel better. Mine did come down to New Orleans for my first stage one (at post op so he could escort me home)... but I went solo for my second stage I and with my mom for stage II... and my daughter is joining me for stage IIb. If there's a IIc, he can come with me again. Who did you see in NYC? I saw Dr Allen. My husband had wanted me to see someone local, so this was my effort to keep it at home. But I preferred Dr D for many reasons.
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Spring: Yes, that's me on MFP.
Ladies, I'm upset. As ou all know I'm almost 6 weeks out from Stage 2. Last week I had an opening on the diep breast right below the new nipple. The Center advised to not wear the nipple protector for a few days, and to Betadine the opening. I did not want to risk not wearing the protector, so I had started wearing the plastic nipple cover that I, myself modified to keep the betadined opening from being covered. The opening is healing fine. I returned to work this week wearing a t-shirt mastectomy bra....that had plenty of room and would conceal the nipple protector.
To my horror, yesterday when I took my bra off, the nipple guard had shifted and flattened the nipple. It bounced back some, but not a lot.
Is there anything the docs can do about this? I'll call Laura this morning and will send pics.
Any advice?
Ttay0 -
Ttay, so sorry to hear that!! I don't know what to say except to send pics and talk to the center. I don't have reconstructed nipples, but I know with mine & certain bras, they go flat and take time for them to perk back up.
Jeanine called me last night after she spoke with Dr. D. First she said my scars look very angry and they are going to send me some tape stuff to put on them. Has anyone used this? I can't remember the name of it.
Then she said Dr. D would do a "body lift" to correct my backside. This should move the incisions up to wear they should be and give me some volume back there again. She said this happens to some people and it's nothing I did. As for the lumpiness in my legs from lips he can go in and smooth it out, but won't take any additional out.I am going to give myself till 6 months to make a decision on what I want to do. One side feels I am being vain and I should just be happy to be cancer free and then the other side feels that with everything I've been through, I should love what I see in the mirror everyday. All my family and friends have been so supportive through this whole ordeal, but I don't think they will understand this one. But, it's my life and my body and the only people who count is my husband and I and I hope to talk to him this weekend about this. They say timing is everything, so we will see. Thanks for letting me vent!! I haven't slept this week just stirring over this
Silly huh?4my4babies, hope you are doing well and resting comfortably!!!
Hugs!!!
Chelle0 -
It's me! My surgery went very well. My dh said it ran about 8 hours but it seemed only about 5 minutes to me. Last night the nurses woke me every hour to check the blood flow to the transplants using something like Doppler radar. Gotta love pain meds because as soon as the nurse was done, I went right back to sleep. I'm sore but I feel like it's more like pressure caused by swelling. I had breakfast this morning and am sitting up in a chair. I don't think I'm going to last much longer though because my head is fuzzy and I'm getting blinky. Definitely feel a nap coming on. I want to thank everyone for all of the prayers sent up on behalf. Clearly God was listening!
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Chelle, I really understand how you feel. I am scheduled for 2C after thinking that I would be done this past December. I'm not trying to be a perfectionist but after coming this far I am not ready to settle. I don't think my next surgery will be to long unless we do more work on the butt. I feel very flat through the top of my hips. Might just be me. I know my husband would very much like for me to be done but I think he "gets it" on some level. I hope your talk with hubby goes well. You are so right that timing is everything. Try to make yourself as happy as you can be. We have lots of years to look at our breasts and bodies. Some of us just heal differently and I know that you have had your share of problems. Don't fret. That is easy advice for me to give you but I'm not so good at taking it. Things will work out for you. Hugs, Jamie
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Great to hear an update from you 4my4babies! I hope you continue to do well.
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Chelle
I think you are not silly at all. When we put ourselves through all of this 12 hour surgeries, 6 hour surgeries, transferring tissue all over our bodies you SHOULD like what you see. If you can mentally muster up the guts for another surgery go for it.
A wise surgeon (not from NOLA) once said to me, "If your car is in a fender bender you take it in to get fixed, we have several cars in our lifetime but only one body, we owe it to ourselves to do at least the same for our body as we would for a car." So if we have gone through as much as we have the little tweaks are not silly, do what you feel you need to do!!!
Lesley
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Hi Chelle, I have used both the brown paper tape and also the collagen tape, both seem to work well but I prefer the collagen. I guess the idea behind it is it helps keep the scar tissue flat and soft. I just bought the over the counter collagen tape, ScarAway, and it advises to use it 12 hrs every day for 6-8 weeks, I think. I am hoping to fade my football patch scar on my recon breast, we'll see.
I hope that you can come to a place of peace about all of this, it is such an emotional roller coaster, and you have had additional family worry thrown into the mix. I think giving it 6months time is a good idea, these surgeries are tough on our bodies. I think we all visit the vanity question, but this is no ones decision but yours and there is no time limit. Only you will know when/if the time is right, it will be clear to you and you will have the necessary strength. My thoughts are with you Chelle, and your hubby sounds like he will support you in this.
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