NOLA in September?
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Back from post-op. Three drains out. But they added the girdle which is really uncomfortable. I can swing by on my way to the airport on Thursday and hopefully get that last one out. Been a long day. Get some food and then sleep. Met a woman from Maine who is doing pre-op for surgery on wednesday. She is BRCA2 and has two young kids. Maybe some of you will see her. She was really sweet. One day at a time.
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Ok wise women....how do you sleep in the girdle???? I am exhausted been up most of the day and cannot nap because I feel restricted like I can't breathe. Are there position recommendations or advice? Gonna be a long couple weeks. Those of you in it for weeks or months....my heroines.
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KBodie - I only had to wear mine during waking hours. It was such a relief to take it off at night. I think that this may be a difference between Dr S and Dr D but I'm not sure.0
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No real help here but I can commiserate. I am having difficulty sleeping but it seems to be getting better the last couple of night. I think sleeping on my back is even more difficult for me than dealing with the girdle. I am considering asking my local docs for an Ambien perscription (recently recommended by women on this thread). I figure I can take it once every 3 or 4 nighs if I continue to have problems sleeping. When I was in the Center my nurse told me I could unhook the top two hooks on the girdle and fold the top down (I am a hip flap girl) when I am sleeping. Don't know if this OK for DIEP. I haven't actually tried it but it sounds like it should make things easier. I regularly (day and night) leave the top hook undone and that portion of the girdle folded down. Also I am now able to walk a few miles a day - which I think helps with the sleeping. Eventually if I don't sleep at night I fall asleep in spirts during the day so I am probably getting the sleep I need. I was also told that if I sleep with my head elevated (for expample using a lot of pillows) it will reduce the swelling in my reconstructed breast which was a problem that happened during sleep early on.
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As a hip and DIEP girl, this is what I did and remember I wore the girdle for 8 weeks plus... After the hip surgery, Dr D said I could cut the top of the girdle off, so I cut off the whole waistband and also on occasion unhooked one hook on one side... these were the same girdles I wore post DIEP... so just ask the doctor... it all worked out fine for me and I did not find it that uncomfortable... Had it been hooked all the way up all the time, that would have been uncomofrtable... I did ask for a smaller one when I was about 3 weeks post DIEP and that one I did not cut at first and hooked all the way up, but then cut that one too.0
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Surfa,
I read about the Maderma on this thread, a nice lady came here and posted links and said how great it was. I was doing a 2B surgery, and got a couple, and I could not *believe* how wonderful they were. and prior I had suffered through Stage 1 and 2 with the Vermanique DOM that I didn't like AT ALL. I took that thing off the minute I was allowed to...
Cocoa butter you can find at Wal-Mart. Look for the brand name "Palmers". I use their Massage Cream for Stretch Marks - it comes in a big tube and has a sillouette of a preggo lady on the front. I use Mederma prior to that while the scars are pink, and then after about a year, I move to the cocoa butter. This has worked for me.
Amy, I added your Dec 13 and 14 dates to the list above!
I had DIEP and GAP like Betsy and I also remember "sleeping through" the DOM -- I did have to "unhook" one side a few down sometimes just to keep my sanity. I did buy other compression garments without the hooks on the side, and finally, I could sleep on my side again, and that was so much better. I used a Spanx for sleeping after the tubes were out. The Marena is superior.
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KBodie: DRUGS! I also found the "Dom" really uncomfortable, but took some pain meds before bed anyway and that really helped me sleep. When I could I switched to spanx at night or the marena and that really helped.
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Amym and Spring, I'm looking for some advice about the Marenas.( I have a few of their sleep bras which are wonderfully comfortable -- not just for sleeping . They are made out of their usual supportive/ compressive fabric, tho they feel supportive not smooshing on the breast. I love them! I'd also worn their post surgical bras in the past, and those are a lot more compressive). But, ANYWAY...I have two more days (HOO RAY) in this horrible DOM and I'm trying to decide about which style Marena to get. I ordered some hook up the front ones that cover the back -- one with thin suspenders and the other thick suspenders. I need some compression, still, on my back and sides, but both of these styles are kind of awkward and uncomfortable. They both lack the thick elastic waistband, tho, which seems like a good thing. But I am going to try to stay in compression (during the day) for a while, so I'm wondering what you think is best for the long haul. Also, in terms of hooks vs. pull on, do you think the hook, being adjustable, will be better if I shrink down a bit? (I don't seem to be changing much since the very first days, but presumably, I am or will. Well, my husband no longer turns red in the face struggling to stuff me into the DOM, so maybe I'm a bit smaller now).
I ordered some Veronique to try and they are even worse -- much less "give" to the fabric than the hospital issued Flex Support. ( I think Veronique was the standard in the past but now only given to people with knee lipo as FS don't come in long). Marena is by far the smoothest, lightest and stretchiest -- tho perhaps too stretchy for the first two weeks.
BTW, to commiserate with the non-sleepers, it is just torture to sleep in these things, and I think drugs are the only answer. Even so, I lie awake and squirm for hours every night. The answer may be more drugs! After a night of being up until 6AM, followed by last night up until 4 AM ( and then my first day back at work) I can not even imagine what tonight holds:(0 -
fwiw, I've never had trouble sleeping in the Marena. I've had sleep issues for other reasons, but I find the Marena very comfortable, never uncomfortable.
Jerusha--because the zippered ones are meant to be worn in the first 1-2 weeks after surgery they run larger than the pull-on version of the same style. That's intentional. Long term I'd wear the pull-on because the zippers irritate my skin, but if you really prefer the zipper style you'll probably have to go down a size.
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Hey gang .. I have been wearing my DOM like religion! REALLY uncomfortable (you all know that), but I am willing to gut thru what I have to do. I only take it off for 1/2 an hour before showering (witness Betsy's "down in the shower experience" ad that convinced me it was worth the de-compression!). It itches, it is hot, it is inconvenient, but I am still in it! I found that getting a bed pillow specially made for sitting up in bed ($15 at Target) and lots on pillows so I was sleeping at a 45 degree angle with at least 2 pillows under my knees (NOTE: I am a side sleeper so this was especially hard!) on a sort of VV position helped with the various pressure spots. It took some learning to sleep like this, but I started more than a year ago with biospy and then mastectomy. It has gotten me thru -- that and regular naps (hard to do back at work!).
Just to note, last night I actually slept on my side, no knee pillows. Flat like a regular person. Will love that until Stage2 when I am sure they will tell me to "assume the position"!
Healthy and goods thoughts to you all --
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Hey Celtic... Your karmic reward for being such a good girl with that DOM and your back sleeping ... I was told side sleeping was ok IMMEDIATELY after stage 2. (Of course, it's been too uncomfortable, but... nice to know I could, if I could!)
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Jerusha.. I wore the hospital issued garment for 8 weeks and right from the get go I would pre hook the sides and pull it up as far as my drains and then hook from there, so I am a big fan of pull on garments. I think the first week after the hip flaps I was hooking it in place, but it was difficult and more uncomfortable.
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KBodi - so did you end up getting the blood or not? I had to go back into surgery for some bleeding after stage 1. After all that, I was sooooo exhausted and could hardly drag myself around those hospital halls. My blood count was low, too, and I was offered some blood. Doc D. said it was totally my choice, but that it would make me feel better. So I went with it - it was like night and day! OMG! I think it is some kind of New Orleans vampire blood with special healing properties. And I think that once you have it, you forever-after have a yearning to return to New Orleans...
So I hope those of you having trouble sleeping will soon find some relief! And to those who hate the dominatrix outfit - I have always liked it, and I'm even going to wear it as part of my Halloween costume in New Orleans in a couple weeks. I am going as the "Black Swan" and the dominatrix will be the bodice of my ballet tutu! And it will be great for when I have to go to the bathroom while on Bourbon! And I hope all of you newbies have already read about the associated toileting dangers of that outfit!
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Springtime: I appreciate the information. I'll need to decide between Kelo-cote and Maderma but i can definitely use the cocoa butter after.
KBodie: about the DOM, I didn't know I had to use it so when I went to my post op, I kind of freaked out that it was so tight. The nurse (forgot her name) tried getting me into a large but I was stressing out on her so she put me in an extra large and told me I would be able to use the large in a couple of days. The first night I could not sleep because it was so tight but my swelling did go down and I was able to move from the Veronique brand to Marena. I preferred the Marena because it fit me better; not as long because I'm short. I kind of got used to it and felt more comfortable because I felt my DIEP scar wouldn't open as much. But, I did what I could to balance my sanity and healing process. I used my girdle one day less than instructed and used another type that just wrapped around my waist that the center gave me. I know it wasn't as good but i didn't think I would heal less if I strayed a bit just to be balanced and comfortable. Psychological healing is really important too so I try to balance it with my physical healing.
Minnesota: you are funny! Have a great time on Halloween using your outfit!
BDavis: how did you cut your girdle? did you have to sew it? The only thing I didn't like about it was the length on the legs, it came down to my knees and I couldn't wear shorts. It's pretty hot here and I almost always wear shorts. I'm hoping I can somehow cut the legs.
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Surfa...I literally cut off the waistband which is about 2 inches... but be careful when you zip up not to zip up and off... I stitched the ends of the zipper on one to avoid this, but didn't do it on the other one... and of course on a few occassions when someone was trying to help me they zipped it right off... but easy to get back on... About the legs, you can't cut those... Do know I had surgery in July and was in NOLA for 2 weeks, then home... so yes, its hot. I bought shorts that were long... like long yoga shorts.
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I think it's interesting the newer ladies are getting the dom for DIEP. I thought they just gave that for hip and stage 2. All I had was the waist band thing I wore for only 1 week after drains were out. I wonder if I had the compression longer any results would be better (like the upper belly).
I'm prepared to buy Marena, after the initial time wearing the dom, and wear for as long as I can stand it. Hopefully several months. Having surgery at the beginning of winter should help.
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Having a moment here. Went to center to meet the GYN about surgery in dec and after I am just falling apart. He says vaginal hysterectomy due to three big babies so they can sew up things to make stronger or just ovaries and tubes so don't disturb vagina. But really it's just emotional exhaustion having to worry about all this. I wish I didn't have to worry about all this. I wish I could go back to my normal routine. I could be bike-riding with my friend, going to my son's football game, playing outside with my kids after school, snuggling comfortable in my own bed....and instead I am in the godforsaken homewood suites uncomfortable in the girdle, now worrying about my vagna with breasts the size and color of eggplants. Pity party day today.
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Ok got on boards after posting and searched until I found the link to the other compression garments. Having a purpose is making me feel better. Going to order one.
I did not get the blood. I maybe should have as I did not feel well for several days. I am not taking any meds to see if that will stop the monster headaches that get me every time I sleep. I wish I could find a combo that would knock me out at night.0 -
So far behind - skimming through!!!
PlainJane - Jen - SO glad for the good onc visit! Woooohoooo!!! Love ya girl!
Back up after Nola - I had a local PS who agreed to see me, but we have an awesome relationship. She now refers people wanting free flaps to NOLA. She did not pull drains for me or anything like that, but since I was so juicy, she performed multiple aspirations and put drains back in. I love her! But not everyone will need someone. Drains can totally be pulled at home - not a big deal.
Running - TIME... is all you need before you are back to running again... and soon this will be a distant memory. Consider this a "short time out" in the big scheme of things. Look, I never did triathlons BEFORE NOLA, but I do them now (not well, but I do them!). You will be GREAT!!! Start slow and before you know it, everything will fall back into place!
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KBodie, thinking of you... Have your pity party ... You deserve it . And, as we know, it's not much of a party! I so know that feeling of just wanting to turn back the clock... make this all go away. When you feel better physically, the emotional part will be less painful. It just sucks. No two ways about it.
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Scars - Another vote for Palmer's - but I use the Tummy Butter. It works great - as does just plain coconut oil!!! And I like Derma E scar gel - works great, no parabens!
Can anyone tell, I am skimming through page to page, then posting, then going to the next page? LOL - too lazy to jot stuff down!
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I second AmyM - Drugs help you sleep at night with the Dom on!!! I would just take a Hydrocodone and out I went! But I really didn't find the dominatrix outfit that bad... kind of sexy in a kinky kind of way!!!
KBodie - I FEEL your pain regarding hysterectomy and all of that decision making. It is exhausting. And any decision is always a gamble - there are times I wish I would have waited... but if I were to develop ovarian cancer and had not done the hyst/BSO, I would be kicking myself for that. It is so hard. Know that we are all hear to listen and give feedback. But the ultimate decision is yours and you know what will be best for YOU. We are here to stand by you no matter what you decide. Sending you huge hugs (((((())))))
Spring - can you remove my appt with Dr. S? I am going to kick off the new year here and have you put January 9th for an appt. with him. Thanks!
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KBodie - it sucks and you have every right to have a pity party. I opted for the oophorectomy (not hysterectomy) but have days when I wish I had waited too...but as Nordy said, better to live without them then to have OC. Hang in there - you'll have better days.
Minn - can't wait to see your costume. Very inventive!
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Minn --
I had gotten a head's up on the "elimination" issues of the DOM, so purchased something called a Sanifem Freshette. Actually came from a camping site and it is a long narrow funnel that fits between the legs with a "hose" (only about 5") to direct the flow. Used it for the first few days as I was a little erratic with urine streams, if you know what I mean! It was great. Small enough to fit into a purse, so maybe that's a solution to your Halloween dilemma!! LOL!
KBodie -- I had a partial a number of years ago, and, cancer or no, it really sucks the life out of you. The thought of it, regardless of how necessary, the surgery and the aftermath (I needed serious counseling!!). Hear you loud and clear. Know my heart hurts for you ...
Spring -- looks like Stage 2 with Dr. D. on December 20th!! PSYCHED!!
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I too am still struggling with the ovaries, and whether to remove or not... My Primary doctor said to ignore my CA125 results, but my tumor was 98% ER positive, so he says have them out... My gyn says have them out, but not the uterus... so I will discuss with my MO next week.. I am leaning toward waiting... I have conversations with women who almost went crazy with menapause... I think I might want to glide a little longer naturally int menapause, now that chemo has started that, and maybe do the oofrec next year or two years... my pelvic ultrasound was clear and I can always get more tests... Thoughts?
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Betsy --
It sounds reasonable. I only had my uterus out (prolapsed and full of fibroids and gunk) and it threw me into instant menopause at 42. So I have been having hot flashes, etc. since then -- I am now 63. Menopause, even peri-menopause, can be very difficult -- you truly think you are losing your mind. If the odds seem more or less favorable, wait a bit. Surgeons love to cut and (other than Dr. D and a special doc at Roswell) if your primary says wait isn't bad, let it go. You've been through so much. Regain strength (physical, cause you are one tough cookie in my book!), keep up with the testing and when the time is right, you can OOF away ... or not. If losing a breast or two was bad enough, when the inner female parts are gone, it is a blow to the psyche.
You know your body ... you know your mind. Your physicians only do that which you decide you have rationally and logically come to the conclusion for yourself.
And that's the truth (quoting Edith Ann!!). If you are doubting, wait ... FWIW
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Unfortunately, I am surrounded by male doctors... maybe too quick too OOF me... once its done, its done, so I am being cautious... of course, I don't want ovairan cancer or any other problems... just not sure what those odds are... not BRCA +...
Gyn said take them out, primary said to take them out... will ask Oncologist next week... but having it done next month seems a bit too soon, no matter what they say.
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bdavis,
I remember reading some published papers on this (BRCA negative and risk of OC) - came out fairly recently - but I can't remember the numbers. I think there is data on this. This is a big deal. I don't know what the answer is to this but I would want a couple of opinions on this one from a number of different oncologists. You could do a pubmed search and see what you come up with.... I don't think this is something gyn or primary docs are typically supposed to be experts in. Whether or not there is any family history of OC must play into this also.... Of course, in the end the decision is yours not theirs.
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Good ideas... I will look into it for sure.
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http://www.ncbi.nlm.nih.gov/pubmed/19088722
Br J Cancer. 2009 Jan 27;100(2):421-5. Epub 2008 Dec 16.
bdavis-
Did a quick pubmed search and came up with this. There are probably other study results out there. Recovering from surgery is probably not the time to start doing literature searches but when you are feeling better are if you are interested you can get the latest study results.
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