NOLA in September?
Comments
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Bettye, so glad to see you on here and thank you for updating. I love seeing your beautiful face in your picture. I am also really sorry to hear about your insurance issues! It makes me want to scream! It is so crazy that you are having to pay out of pocket. I really hope the oncologist's office is cutting you a deal. Sending lots of hugs, prayers and positive energy.
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Adey - what is a bump and where do you find the list?
Bumped this thread for the stage oners...A Compulsive Organizer Prep for Free Flap Surgery
BettyeE - If you have the energy, inundate the insurance company with research, letters etc. to see if with the improvement they will pay. Will the company doing the trial cut you a break? This kind of stuff makes me crazy. Wishing you well and continued success.
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I plan to appeal to the ins co as soon as I see how the scans go! I am betting on lots of improvement.
Thanks to all my NOLA sisters.0 -
Bettye, wonderful news!! The insurance part is crappy, but hopefully you are a trailblazer for others on that front.
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YAY Bettye!!!!
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Bettye girl YOU are amazing!!! I'll keep all digits crossed that those TMs' keep plummeting!!!!
Many hugs dear friend;))
Marcia0 -
I love my family. I really do. I'm drowning in riches of family love. But I need your help.
My parents have decided they want to come to NOLA and be with me for my surgery next month. I understand this. I'm their 'baby' and I dropped everything and flew to my mother's side a few months ago when she was in the hospital with cancer - twice. It's driving my dad bonkers that he can't DO anything for me.
The problem is I really don't WANT them to come. It's a 500 mile drive for them and I know myself well enough to know I'll feel compelled to be sociable. Not that they'll be pushing me to be sociable. They're willing to just "sit in the lobby and wait just in case I need anything"
I want some way to gently let them know it wouldn't be a good idea to come. I love them dearly and don't want to hurt their feelings. What is it like in the hospital following surgery? Did you want family around? Are there policies about visitors? What can I suggest by way of a "booby prize"? They keep asking if I need anything and I can't think of a thing!
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Eva, how lucky you are to still have your parents! BUT, let them know that you will need them more when you get home than when you're in the hospital. Your needs will be catered to, and you have to be able to rest. When you're out of the hospital, you'll still need rest and won't feel social. I know they don't expect you to be social and would happily just hang out waiting to look at you to make sure you're okay. But if you give them a task like coming after you get settled home, to take you to the grocery store, to put meals in the freezer, etc then you will feel more up to hanging with them, or even just eascaping to your bedroom at times when you're done chatting. Your house will be more comfy for them than a hotel in a strange city.
If they insist on NOLA (maybe it's a place they've always wanted to visit?) then perhaps they can come during your last few days when you're more mobile and alert. You'll still be tired, but they can do a lot on their own, if they're that type.
I'd really nix them coming while you're in the hospital. You're going to still want to take care of them, that's your role, and you won't be able to.
Be firm on this!!
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Eva -- What AnneW said ... and gentle candor, quote those of us who have been through it, make sure they know that they will be kept informed on your progress while you are in the hospital, YOU will call or e-mail or whatever as soon as you are able, but that it isn't recommended that they stay with you. ONE person is best. This is one time in your life when you have to attend to your needs. They may not initially understand, but, as a parent who hasn't always had my way with my child, eventually I (and they will too!) think it through, respect her decisions and get over it. Right now, it is you first, them second. You are blessed that they want to be so close, but too close when you really want space is suffocating. With love, tell'em the truth ...
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I'll bump again. Which means I post on the thread so it shows up on the active topics and is hopefully easier to find. Here I go!
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Bettye - So glad that the tumor markers are heading south. I agree with everyone else that you need to bombard the insurance company with letters and copies of studies etc. It's infuriating that you have to fight them. I'm glad that you were able to put your health first and battle the insurance company second!
Eva - Love you your limericks. Maybe you can write one to your parents thanking them for their offer to be in NOLA but you'll appreciate their presence more when you get home.
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Hi Eva,
I'm going down for another stage one and I will be alone for the surgery and aftercare in the hospital. (My hub is coming down later when we go to hotel--he just doesn't have the time off again). As you know I already did hip flaps so I can tell you that the nurses at the hospital ARE THE BEST and you won't need both your parents there. While I did send my hub out once or twice to get water, etc. I know that the nurses will take care of me and it will be fine. They help you out of bed when you are ready, to the bathroom, shower, etc. and will make sure you are pain free! Why don't you bring a laptop and skype with them so they know you are ok? hope this helps!
Also, I was thinking today, I had a lumpectomy, re-excision of lumpectomy, then the surgery (BMX and hip flap recon) and do you know that the lumpectomy at major medical hospital was even more painful than the 3-in-1 NOLA surgery!
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Hello everyone
This is my first post on here, but I have been reading this thread (on & off) for about a month, but didn't want to post anything until my dates were actually confirmed.
I will be having GAP surgery with Dr. D and Dr. Stolier on June 1st. I have to wait for the summer so my son will be out of school. It's great to have time to prepare and buy things you will need, but it's hard knowing it's still 4 1/2 months away.
I have a question about the hip drains. I know they give you a belt that will hold the drains, but how does this work with your yoga type pants. Do you need a big enough waist to fit the drains and belt inside your pants or do the drains hang on the outside of your pants? I just can't seem to picture this in my head.
I know it's a few months off, but I hope to meet up with some ladies while I am there.
Thank you!!
Michelle
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Michelle -- The drains actually are put in sort of a "fannay pack" made of fabric that they give you, so they are not under the pants, but sit loosely around your waist. Many of the ladies have other ideas than the blue "baggie" but it works just fine!
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Ok, thank you!! I am planning on buying some yoga pants and wasn't sure if I needed to get a size bigger due to the drains. So it sounds like the pants will just sit on your waist and the belt and drains will be on top.
@ Eva, it's amazing that you mentioned family. My brother just send me a message stating he wants to come to New Orleans to see me. I don't want him to and I will have to let him know this "gently". I would rather him travel here to see me once I am home and settled and up to visitors.
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It is official. I have my next surgery date! March 21st, Spring can you add me Dr. M. She isn't sure if she will have to do a baby flap to replace some of the flap that is still hard. So she is going to treat it like a stage one but not as extensive. So what would this be...stage 1 1/2?? Ha ha.
Thanks,
Michelle
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Hope we criss cross!
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I have seen some women speak of the perfect "packing list" for NOLA. Do you know where is can find this?
Thanks!!
Michelle
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Welcome Michelle! Here's a packing link: http://community.breastcancer.org/forum/44/topic/768583?page=1#idx_6
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I am going to add the packing URL with my hints and tips or whatever you call them up top.
Also will add the two dates for Momma2Four and Chellehump (what a handle!) Welcome Chelle! I hope you don't mind me dropping the "hump" LOL.
BettyeE!!!! I echo what Nordy said, I love it when you pop by here and fill us in. I will pray for you that the drug keeps working, and zaps that tumor, and that insuance can be reasonable.
Nordy, I think you should make an insurance VooDoo doll Ephigy thing and stick pins in it! (That is not very Yoga like of me!) I will pray and meditate on insurance's heart softening. Maybe if we got at it from both ends we will bet some traction for you and for BettyeE!
Eva, Do you have someone going with you on this surgery trip? Besides your parents? I can tell you that when I had my Stage 1 (which ended up being MX with immediate implants with alloderm because I didn't have enough fat and Dr. D wanted to preserve all my fat and get it after rads) that my in-laws came with us and we got a 2BR Suite at the HomeWood Suites. My mother in law brought me breakfast up every morning! I was glad they were there. Just saying! But you know best for you. But you do sort of need somebody with you at the hospital, at least I personally think it is better with help than without, although the nurses are attentive, nobody is as good as family if you feel comfortable enough to crab at them, all the better. (My poor hubby!)
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Hi Springtime
LOL, the "hump" comes from my last name, but I do get a lot of that
Thank you for adding my date to the list!! I'm sure it'll be here before I know it.
I printed out the "packing list". Thank you Paula!!
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Spring, I do have someone with me the whole time. My husband is coming the first week and then he has to go back to work and my sister is coming for the last part and to accompany me home. I would definitely not want to do it alone! I didn't think that was even allowed. My sister is part of the reason I don't want my folks to come. They've been living with her during mom's whole cancer treatment (months) and my sister needs a break. I know she'll be taking care of me at the hotel, but I expect to be sleeping a lot and it should be very quiet and peaceful. Just what she needs.
I talked to my folks this morning and told them I needed as few people around as possible and that there would really be nothing for them to do at the hospital. And really, after five months of hospitals for my mom, did they really want to sign up for more hospital time? I encouraged them to take a little trip to celebrate the end of mom's treatment. Just not to New Orleans. I promised to call often and keep them well informed. It's all ok.
Eva
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Eva... My mom wanted to come down for my stage I and I explained that I had a helper and even when I needed a travel escort home, she was offering to do that.. I then explained that I needed someone to physically help (lift luggage etc) and that I would spend time worrying about her and I just couldn't do that... As a compromise, she came with me for stage II... I was gald to have my mom with me then when I needed less help. As for having a brother (Chellhump)... no way. There is plenty of naked time, so not the place for a brother.
PLUS, I was in the hospital alone for 2 weeks in August and was fine... the nurses were great!!!
YAY Michelle!!!
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Hmmm... I never thought about getting an insurance voodoo doll... LOL... Wonder if Minnesota has one??? She needs one too! Maybe I should have picked one up while I was in NOLA!
Eva - I am glad to hear it all worked out with your parents. I think you may feel up to having them there with you at your stage 2 - for most people it is an easier surgery.
Chelle - welcome to the thread!
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Nordy- when I was recovering my boyfriend brought me a "jinx remover" voodoo doll from the Quarter. That sounds about right for insurance appeals
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Oh, also... I'm trying the marble in the belly button thing. I will report back.
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@ Betsy, Yeah I think he just wanted to come and be able to visit me while I was in the hospital and while I was recovering at a friends house, but I actually just spoke to him on the phone and told him that I would rather he just come here and visit. I have my husband and my best friend coming with me and then I am staying at a friends house once I am discharged, so I will have tons of help and having him there would just stress me out more.
@ Nordy, thank you!! I have found this thread very comforting and very helpful!! I hope once my date gets closer that I will connect with other women who will be there at the same time as me. I will be having stage 2 the first week of September.
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Nordy- I bet you can find one on the web!
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Eva, glad it worked out!
Jesk - what is the marle in the belly botton thing? I must have missed something!
Somebody needs to get us one of these voodoo dolls from NOLA and send it to Sheri, who can poke the heck out of it for everybody on the list!
Voodoo is what we need
Insurance has us all peeved
A poke and a prod
A fierce little knod
Don't forget the NOLA beeds.
Better leave the lymerics to Eva!! LOL
Betsy, brothers and naked time, LOL LOL LOL. Fer sher. No brothers.0 -
brothers and fathers... no no no... and no uncles, male cousins, sons, grandfathers... you name it... If it has a penis and isn't your husband, squash it... Stage II, a little different, but not stage I.
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