NOLA in September?
Comments
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I want to say that I've flown twice after surgery from NOLA and never had a moment's problem - no search, no nothing. They just waved me through. I used a wheelchair both times. I was worried the first time too, but it was a breeze. They seem to be quite used to surgical patients going through the airport there and it's not a huge airport. Definitely use the wheelchair. It's great.
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Helping research..... Hi all. Since I had sarcoma, a rare form of cancer I chose to join a reasearch initiative called "23andme". They have just released a breast cancer research study and it is free to those who fit the criteria. I have attached the lin below:
And if you know anyone with sarcoma or myeloproliferative myeloma please send them my way or to 23andme. We are 120 people short of 1000 goal for sarcoma. This company is very legitimate and has been able to get results that have been helpful to cancer patients in a very short amount of time. One of the non-paid doctors is tops in the field of sarcoma research. They are doing what drug companies cannot do and they do it quickly.
Thank - Karen
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About compression.. Dr D told me that the longer I wear the garment, the better the results... that 2 weeks is minimum and 6 weeks for best results... that I could just wear it during the day after week 2... and after that I wore flexees...
About sizing, I wore the DOM XXL, and then XL and bought the Marena L and M, but it kind of depends on your build. I suggest calling them with your measurements POST surgery... you can google a 20% off coupon.
Jenlee... after my surgery, I awoke without my scarf on and it was the first time I was bald outside my home... I did not have the energy to care. And then being in NOLA in the middle of the summer, decided no one knew me and so I was going topless... and never went back to the wig.
I flew three times roundtrip with drains, and had no problems...
As far as chemo with drains, I agree that would be up to the doctor... I can't see it as a problem, but who knows. I had my hip drains for 8.5 weeks (partially because my DOM was too big) and partially because I had the DIEP at the 4 week mark and that just juiced me up. So Isuggest making sure you have good compression on your butt cheeks.. At 8 weeks, I doubled up compression (wore flexees over the DOM) and added ABD pads (3 folded) per cheek... it really helped.
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About compression.. Dr D told me that the longer I wear the garment, the better the results... that 2 weeks is minimum and 6 weeks for best results... that I could just wear it during the day after week 2... and after that I wore flexees...
About sizing, I wore the DOM XXL, and then XL and bought the Marena L and M, but it kind of depends on your build. I suggest calling them with your measurements POST surgery... you can google a 20% off coupon.
Jenlee... after my surgery, I awoke without my scarf on and it was the first time I was bald outside my home... I did not have the energy to care. And then being in NOLA in the middle of the summer, decided no one knew me and so I was going topless... and never went back to the wig.
I flew three times roundtrip with drains, and had no problems...
As far as chemo with drains, I agree that would be up to the doctor... I can't see it as a problem, but who knows. I had my hip drains for 8.5 weeks (partially because my DOM was too big) and partially because I had the DIEP at the 4 week mark and that just juiced me up. So Isuggest making sure you have good compression on your butt cheeks.. At 8 weeks, I doubled up compression (wore flexees over the DOM) and added ABD pads (3 folded) per cheek... it really helped.
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Its been a while since I've posted on this thread and yet I read it daily. So much going on!
Nordy- I think of you and the support you have given me about fighting with insurance. Keep the fight going! I am still battling mine. We are in the midst of an independent review which is the final step with my insurance. If that does not work we are going to move onto my husband's PPO plan. It was a difficult decision because it means more waiting and for me that has become so challenging. My husband and I just felt we had to go through this last step and know we did everything we could before making a move onto his plan. I would be devastated if my husband's insurance did not work and I lost out the opportunity to go through the last option with my plan.
I echo some of the comments made here as well about being a planner. After learning of being BRCA 2 positive I went right into figuring out what I could do. Now all I can do is wait. I can't even be sure when I will be in NOLA and that is so hard...I can't plan anything! I keep trying to focus on the end goal which is getting the BEST treatment and end results.
On another note, my mom had an unilateral mastectomy on her remaining side a few weeks ago, after learning about being BRCA 2 positive (she had breast cancer, unilateral mastecomy, rads, and chemo 22 yrs ago). She had surgery done at our local hospital. After going through that experience with her and even comments she had made, she is so encouraging about me treating in NOLA. I am so proud of her! She is so tough and brave and definitely blessed to have her in my life!
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Geralyn, YAY!!! Dr. D. loves a challenge. I am SO happy for you. You are in the best place for you. Keep us updated!
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Betsy, that's so odd! Dr. D and Jeanine have told me the opposite - no need or difference in outcome from wearing it after two weeks. Wear strictly for comfort. And I've asked THREE times!
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It could depend on what you had done vs what I had done... right?
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I am having stage 1 in NOLA on July 5th and have been looking for a pair of short sleeve, button up silk PJ's w/ long pants. I never realized how difficult it is to find silk pajama's!!!! Do any of you have any suggestions? I have been to Dillard's, Nordstrom's, checked on line and can't find much of anything. Thanks! Katiejane
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Hi Katiejane, my pajamas aren't really silk they are polyester. I got them online. They are very slick and worked perfect for stage1. Try Ebay......they were brand new with tags on. Also try Victoria Secret.
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Would someone mind posting examples of the Marena and DOM garments that they use? Are these necessary for the trip to NOLA or just after you get home? Thanks!
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Katiejane: Look on Amazon. I joined Amazon prime years ago, you can get practically anything delivered to your front door within two days, including silk pj's.
So everyone brings their own pajamas?
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Jen, I don't think everyone brings their own pj's but once discharged to the hotel, I wanted something comfortable and light, something that won't rub my skin which seems to be so sensitive since I completed treatment 5 years ago. I will look on Amazon! Thanks!
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Katiejane - I ordered a pair from the Victoria Secret website. I love them! I also bought a pair on sale at Macy's.
I am a bit worried about surgery and my radiated breast. Has anyone that has had this surgery with radiation had a good outcome. I didn't have difficulty with radiation during treatment - tolerated it well. The radiated breast doesn't look any different. Dr. D was not concerned but, of course, as you can tell, I am!
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I liked wearing my own pjs at the hospital... I bought a very soft nightie from Target... not silk, but very soft. I am not a fan of silk.
And the Marena would be something you buy after you get home... the DOM they give you has zippers on each side (with hook and eye) so you can zip it onto yourself and not pull the garment over your drains. The Marena everyone buys is a pull on, so you would want to wait until your drains are gone. They also sell a Marena for stage I (with zippers) but I haven't heard of anyone buying that one. Plus, you want your swelling to go down a bit before measuring for fit.
Coupon code 6325E gets you 20% off
This is the one most get http://marenagroup.com/garmentstore/product/tabid/199/p-98-2nd-stage-girdle-with-short-legs.aspx
But I go the one that went below the knee because my knees were lipo'd.
Someone asked about the crotch opening... I found that the DOM and Veronique brands had an ample opening to keep clean, but the Marena not so much.. so I pull it down to go to the bathroom... anyone else agree?
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Katiejane: good point!
I got this a few months ago due to hot flashes from chemo. It's not particularly attractive, looks like something my mother-in-law would wear, but very comfortable and you can step into it. http://www.tlcdirect.org/products/product.aspx?sku=8226
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Oh my goodness . . . this has got to be the most prolific thread on the forum!! I just wanted to address the question about physical therapy - it's quite a few posts ago, so I am not sure who asked. No, PT isn't required. That said, I will tell you about the conversation I had today with my physical therapist. Get ready for a long post . . . I said to her that I think that one of the very few things that NOLA lacks is their attention to the post-recovery period. Now that is not at all surprising since so many of their patients come from out of town, and the last time they may ever see them is at discharge after their final surgery. I, and the therapists in the practice I go to, feel that many if not all women would be well-served to have a referral/prescription for physical therapy at an appropriate time after their recovery.
Disclaimer - I am NOT a doctor or a health professional. But i do want to share, as best I can , what I have learned. First, many women suffer side effects from the initial surgery - mastectomy with or without node removal. One common problem is "frozen shoulder" - limited range of motion. This is something that many therapists are adept at treating, and particularly those who specialize in women's health. So that is just some 'basic' PT that could be helpful to all mastectomy patients. Many women have their MX in NOLA and have immediate reconstruction, so the place to learn about the benefit of PT and get a referral would be in the hospital at NOLA.
For patients who have had DIEP or other microsurgical procedures, there can be other issues. The pathways of the lymph system can be disrupted; in addition, cutting into the fascia causes scarring to form, which can then pull on other areas of the body, including the pelvic region, hips and lower back. This scarring is deeper than what you see when you look at the external scar. The external scar can heal nicely, feel soft, etc. but the internal scarring can cause tightness in the fascia and lead to other issues, ranging from mild discomfort to pain. These are things that a therapist trained in and experienced in manual therapy can help with. They can perform manual lymph drainage, as well as teach the patient how to do it themselves. They can also perform myofascial release massage to help ease the tension in the fascia and to help 'soften' the internal scarring. Many of us have ongoing tightness in the abdomen to varying degrees, and these techniques can be helpful. They can also assist in teaching the proper stretches and exercises to help with the tightness and problems that the tension may have caused, and to help strengthen the abdominal muscles. Also, because the nerves have been cut, there can be some 'disconnect' in our minds sending our bodies signals when we are trying to do these exercise to tighten and strengthen the abdominal and pelvic muscles, and a good therapist can tell by look and by very gentle feel when we are doing the exercises properly, or when our mind just thinks we are. (Does that make sense?)
I had some PT beginning at about 6-8 weeks or so after my stage 1, maybe a bit further out than that. I had more after my stage 2, and I am seeing the therapists again now, a year later, just because I feel it is so beneficial and I want to get my body into even better shape than it was before my surgeries. I really believe it is helping to loosen the internal tightness I feel in my abdomen. They are doing work to release the scar tissue - I do not seem to currently have issues with the lymphatic system or with lymphedema. Thankful for that. I am doing yoga now as well - totally new for me - and that has helped me to feel better all over, including increasing my abdominal strength as well as stretching the muscles and fascia. (I can do planks now!! Didn't even know what one was 3 months ago!)
I really would like to see the Center become pro-active in regards to all of this, and as I said, I would love to see them prescribe PT for every patient to at least try. I was told by my PTs, both of whom trained in manual therapy, that it is often hard to find a practice where a patient can receive these services, because the reimbursement from insurance companies is generally lower than what we often think of as standard PT - show the patient some exercises, have them practice, give them a routine to do at home. No surprise there re. the insurance companies, but it seems that most big cancer centers would at least have a list of good referrals for well-trained hands-on therapists in their area.
(Ok, off my soapbox now) Hope this helps whoever asked about PT . . . Do it! Your body will thank you!
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And these are the lounge pants I bought.. they also sell shorts that were great in the summer in NOLA and fit easily over the girdle...
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I found a fantastic set of satin leopard print pjs at our local thrift store for only a few bucks. I HIGHLY recommend some kind of slippery fabric. It made it SO much easier to get in and out of bed.
Amy, thanks so much for writing about PT. I started it 4 weeks after stage 1 and look forward to getting back to it. They told me I could start two weeks after stage 2. It made a HUGE difference in my mobility and pain.
BTW, I'm doing my first post-op show tomorrow (Wednesday, May 23) at 5 pm pacific time. It'll just be me, my piano and all 60 inches of fresh incisions in my living room streamed live on the internet. If you want to watch, be here http://ustream.tv/channel/eva-moon at that time. The video site has chat, so if you type in messages I'll see them in real time. I'll sing the song I wrote about my BRCA journey, but most of my songs are funny and some may not be suitable for all ages (just so you know). I'll be debuting a song I wrote just a few days ago on a topic suggested and voted for by the public. Don't want to give too much away, but expect kittens.
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Thanks to all!! I'm going to have to find the closest Target-I have heard alot of good things about their products, especially that there is so much to chose from! I will also check out Vicky's Secret and a few other sites. One question though......I have bilateral lymphedema, also in my back and chest. Will I be wrapping every night? Maybe I should buy sleeveless?
Jen, yes that nightgown looks like something my mom would have worn but I don't think it will make a difference to me! At this point, comfort is the name of the game! And I like the baggy sleeves! Does it run pretty true to size? Kaitejane (Kathy)
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Radiated breast- My right side was radiated and I had no problems. I was expecting the football scar, thinking the radiated tissue would have to be removed, but my mastectomy scar was used and everything is fine. Actually that breast is.... firmer, more stable. The left has "relaxed" and will need to be lifted a bit.
The opening in the Marena was fine for me, no need to pull down.
My mom once bought me a house coat or whatever you would call it as a gift! I thought, really?!
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Betsy
I saw those pants and I am looking to buy some. My thighs are the largest part of me as I have a small waist. I don't know how much you swell in your hip area. What size did you buy in those pants?
Also, did you find simple button down shirt pajamas at target?
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I bought medium... in both the pants for my November surgery and the bermuda length for my July/August surgeries.. and I bought an over the head sleeveless nightie, same company but I can't find it online. Maybe the actual store will have it.. It is super comfy and easily slips over the head. If you want button down, I am sure they have something.
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Amy, I agree with all you said about PT. Fortunately I went into my BMX knowing of a local pain Dr who specializes in post MX rehab (with assoc PT practice). I didn't have to flounder or rely on direction from CRBS. I even directed a local NOLA grad to my Dr who was years out from initial surgeries and couldn't find relief from various PTs. Since my Dr. treated both of us, she wrote to our docs to say she'd like to set up a post op treatment plan. I don't know if she ever heard back. I will say CRBS was very willing to send me an Rx for PT, but they had no local references for me (that would be sort of superpower-y). I needed so much PT after my initial surgery, especially on my cancer/ALND side. It does sound like not everyone needs it as much as i did. I'll be going back after my surgery in Sept. I have to do my stretching very day.
To whomever was worried about being too small if you lose weight: the doctors tend to 'overstuff' us at Stage 1. It's much easier to take away at Stage 2 than to add. For me, I asked to be a c cup (from F) but was still around dd after Stage 1. I settled down a lot in the 7 months in between. At Stage 2 Dr S asked me if I was ok with my size. I said yes, that what I really wanted was to be proportional as I lost weight. I'm 20lbs down from stage 2 and now I'm a d cup. I plan to lose 20 more before 2B, so I may just end up at the C cup I wanted; not smaller.0 -
Katiejane, i would say that the nightgown is generously cut. That's fine with me as it seems more comfy that way and I wanted to make sure the opening was large enought to step into. It does resemble a housedress, only softer
I usually sleep in pj/yoga-looking capris, sort of like what Betsy is recommending and a tank top, so the nightie was a big change for me.Eva, did someone write you a prescription for PT? BTW, I had a great time at a local thrift shop yesterday, should have looked for pj's! I got a few stretchy skirts to pull on, and some ugly but roomy short sleeved button up tops. And a short-sleeved hoodie! All for about forty dollars. I can re-donate the stuff when this is all over, or mail it to someone else on this thread, kind of like that book/movie about the sisterhood of the traveling pants.
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katiejane- you might try wintersilk to see if they have what you want. (I am not a shopper but use this company sometimes.)
http://www.wintersilks.com/?sc=UF2SEMGT&utm_medium=ppc&utm_source=google&utm_term=winter_silk
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My insurance does not require a prescription. I knew of a good local PT through my husband who was treated for back trouble arising from sciatica. She doesn't particularly specialize in MX, but she's very good all around. She did a combo of exercises, stretching, massage and tissue manipulation. I was actually really suprised at how quickly I regained my range of motion. Within a few weeks I actually had GREATER range of motion in my chest and shoulders than I did before surgery. I am defiinitely going back - probably next week.
Regarding pj's I got a great set from Dillard's online - nice enough to wear in public but totally comfy for sleeping in too. I just went to look and sadly, they are no longer available. Here's a picture: http://dimg.dillards.com/is/image/DillardsZoom/03542489_zi?$mobileProduct$ - I'd be willing to mail them to one of you. Size medium. If you google "button front pajamas for women" you should get a lot of results. Here's a pic of me in my thrift store jammies while I was at Homewood Suites in NOLA. I still love them: http://evamoon.net/blog/2012/02/15/the-other-side/
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Eva, if you are willing to send them, I'd definitely take them. I haven't bought any pj's yet
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They're yours, Michelle. PM me your mailing address.
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I just sent it to you Eva
Thank you SO much!!
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