NOLA in September?
Comments
-
Hi Brenda,
Im sorry you are having a hard time. it will get better! You are still very early out. I know its hard when others are doing & feeling great after their surgery. Soon you will be too.
Maybe try to have whos ever staying with you arrange pillows & see if you can come up with a more comfortible plan.
I tried sleeping propt up the 1st 2 nights at homewood & was not very comfortible.
the next night I tried more flat on my back- still with a head pillow & used a pillow under my knees. It was much better.
I hope you can find something to work for you.
I was still wondering what I had done 4 days after surgery.
But things did get better!
Here is a recent post on a tip for how to get the Dominatrix outfit on ( I didn wear one- so I cant help you there)
macksix6 wrote:
Jamie the trick with the dominatrix outfit is to cheat and hook/ zip up one of the legs to about the hip area and then hook/ zip up the entire other side. Then you ease into it and only have to sruggle with a few hooks and zip up to the top. You will quickly get the hang of it but the first few times will exhaust you. Good luck
We are here for you.
Pam
0 -
Thanks for the input Pam. Am about to go and tackle the dominatrix outfilt. I am sure getting the best of the darn thing will cheer me up.
LOL. Sure helps knowing there is sooo much support out there!!0 -
Spring....sounds encouraging on the ? fat lump....sorry you have to have a biopsy tho! it does NOT look like cancer hallelujah! Give the LE stuff 2-3 weeks and I bet you'll have some relief. Do you like your therapist? I REALLy like my girl and that makes such a difference. She is very young-HAH!.......... 40 this year! I mean she acts young! Just like me! or maybe I just act immature! LOL! anyway we talk shop and she is VERY interested and amazed w/ all this stuff....I talk about you all and things people complain about or 'one of the girls on the thread.... blah blah blah!'
Hello......you will use the back max for MUCH more than this promise! it is so great for watching TV/reading and you can turn that big wedge both ways to make more upright or put the smaller wedge in there to adjust it. I could sell this product becasue I genuinely LOVE it and not just as a medical device! Do you have it out and are you using it yet?
Brenda-which procedure did you have? are you still taking your vitamins? Make sure you're getting all the B's they help w/ the blues.
Make sure you have a place to sit when you get outta the shower and put a towel on the floor so you don't slip getting out....or put a towel over the toilet seat and sit down while you situate all your appendages......You should lose most of them before you go home? and that will help a LOT -one or two is doable-you still have to be careful and may move slow but if you have 4 plus that onque -sheesh cumbersome
On the dominatrix......At first I did just a few hooks on the bottom of the legs then went one side at a time then when I got it up/in position - one hook, then zip, another hook then zip, til you get it all the way...YES it takes a while esp while you're padding all the hoses but you'll get it after a while. And remember many people on this thread felt like their butt was kicked at first but we all got our strength back but some of us took several weeks. Melanie was the one who said she just is NOT herself for a couple weeks at least post surgery.....it just takes a while, she's edgier, in a funk, etc....this will pass....you've just been thru a major deal, cut yourself a break....a BIG one if you are not having your honeymoon period(yet).
And you should NOT be searching thru this thread right now to figure this stuff out....you should only be on to hear how wonderful we think you are and that it IS going to get better!....we are all very smart but it is OK for you to call the hospital....were you at St. Charles.....call those nurses 24-7, and they can talk you thru....they'll be calling you too and if you still need pointers/demo get those office nurses to show you tomorrow. TAKE your pain meds scheduled, not as needed, you can wean later unless they're causing other problems...there is just no need to be a hero....we already know you are!
0 -
Jenn - SO sorry about your friend, but how lucky is she to have you to help her through this!
Brenda - Like CT said, it is not unusual to have some let down after surgery. It will all be okay. I did the dominatrix a little different - I did up the bottom 2-3 hooks on both sides, slid it on (slid the grenades (drains) through the crotch, then pulled it up. Then I would just hook, zip one side, then hook, zip the other side alternating until it was up! It IS very tiring at first, but it does get better!!! Hang in there! Before you know it this will be a distant memory!
Okay, so, I had my usual onc appt today and told him I wanted to follow up my liver cysts/hemangioma w/ultrasound instead of yet another CT. He was agreeable, but I don't think overly happy - however he did say everything still feels totally normal on physical exam, so am hoping that that continues. Should I have agreed to another CT? I know if they find anything suspicous that I will end up having one anyway, BUT that would be my 3rd this year! Plus 2 chest x-rays, a hip x-ray AND now they scheduled a DEXA for baseline bone density since I now have no estrogen. Am I crazy to forego the CT? Anyone? Ferris? Buhler?
MackSix - your doc suggested US - what do you think??? 0 -
Wait, am I confused, Spring, you don't have to have a biopsy, right??? Just a more indepth US? Regardless, good luck and I hope it all turns out perfectly normal!
0 -
Okay, Jenn was posting at the same time as me - looks like we basically did the dominatrix the same way! WTG JJ!!! LOL
0 -
I AM HOME !!! Finally!!
Brenda you did what was best for you. Give yourself time and sleep. I was lucky in that I slept really well the first couple of nights home so I was feeling good because I got some good sleep. Now I need to get some sleep again now that I am home.
Went for my follow up today and found out the nodule that they removed during surgery (I had no clue) was just a stitch that my body had rejected from a prior surgery. Shocked me to no end. I never heard anything about my CT so I am hopoing and praying that nothing showed up. I get to go shopping tomorrow for a new bra and some spanx. I am allergic to the beloved black outfit and Dr. S thinks it would be a good idea for me to get out of it. I also got my on-q ball removed along with the wires from the doppler. Dr. S looked for a little bit and said we will decide what we are going to do in April when I get there
. So away I went after they padded me up with teh AB Pads almost all over...lol....I showed my MIL when I got home and she couldn't get past my stitch marks, but I sure can. I have a couple of places where the glue has came off and the scar is almost invisible already. So happy with my decision to go to NOLA
.0 -
Beverly good to hear that it is just a hard area of fat. Hopefully it will shrink down. I am curious is the US the standard for follow up for Diep/gap gals?
Jennifer sorry to hear about your friend but she is a lucky person to have you as a mentor. You will make her journey so much easier and will help guide her all the way . What I would have given for a friend like that to share my worst fears and anxieties.
Nordy not sure I can help you out with the CT/US problem. I know my Dr suggested the US instead of the CT scan due to the Rads. From the US they felt the liver cysts were ok and wanted follow up on the endometrial lining, which after the biopsy was OK. Could they determine a change in your CT scan from the one at NOLA? An US may give them a different look and it will sure save your body the rads.
Brenda hang in there. I was in the hospital for 6 days. I didn't think that I would feel well enough to get out. I had a very difficult time trying to stand up without fainting. I ended up having my post op visit while I was still in the hospital and then left the next day. The first few days you will need to take a nap after you shower and get back into that dominatrix outfit. We have all been there. It will get better. Don't hesitate to call the nurses for help and remember we are always here for you.
Stephanie
0 -
Nordy,
I refused a CT last year.....during rads they do that baseline one and then another supposedly before the boosts......I was SO majorly PO'd that they just went ahead and scheduled me for it w/o explaining, telling me the rationale, etc after the rad onc had already told me she was going to use the same prone position for boosts. I just about popped a gasket when I looked at my online stuff and saw I was scheduled and this was right after I'd almost quit in the middle took a week off so I could see some improvement because I had blistered burns that were called a 'skin reaction' and now LE......just goes against the whole 'do no harm' philosophy. Retrospectively, I do wish I'd skipped rads..Hindsight is 20/20..I was so afraid tho at the time to buck the protocol I sorted into and/or be labelled non compliant....I am SO over not following my gut(plus doing extensive research to back up) and have made more than one decision w/o my BS or other doc's approval-choosing Nola was one. I don't know...
I still do take Tamoxifen sort of out of fear of if I could live w/ myself if...?...and I HATE to operate off the fear factor but......??? dunno girfriend? Just some of all this diagnostic and f/u seems excessive, and what a racket! Dumb question- I thought dexascan wasn't a high radiation (if any?) procedure? I see my med onc in 2-3 weeks....I will be making lists of all those things we've been talking about for the past 6 mos BUT I am not dreading this visit NEAR like last year and it's because I no longer have ducts and lobules! Ugg I agonized over whether to go on that ovarian suppression study she wanted me to 'consider'....whatever....I am SO glad I did NOT. The whole randomization didn't and still doesn't sit well w/ me.
Well, I have said enough! sleep tight ladies!
0 -
Thanks for all the good energy for Tre. Surgery went well and we are home now. Shriner's hospital is so good. I love that place. And Tre is such a trooper when he has surgery. 2 hours out of recovery he is eating pizza and cookies and ready to go home. He so doesn't take after his mother in that regards.
0 -
2tzus - My experience is that most times you get to talk to the anesthesiologist the day of surgrey. But, since I had such issues with stage 1 anesthesia (major memory loss for months!) I called the hospital and requested an appointment to speak with an anesthesiologist. Once it was obvious that I wasn't nuts, he said that I might want to consider skipping stage 2 since there were no guarantees on the memory loss getting even worse. Plus he looked over my anesthesia report during stage one and saw no abnormalities. That upset me, the thought of living with the stage 1 results forever and I told him so. So, bless his heart, he spoke to my PS and did some research and found that a small percentage (abougt 10%) have the reaction I did to the point of major memory issues for 6 months or more; some permanent. So he agreed to switch back to the narcotics of previous days and minimize the gases they use these days. And stage 2 surgery went a lot better and my thoughts were so much more clear after that. Still a bit of short-term loss but nothing like before, when I thought I was well on my way to dementia!
Sorry for the long explanation, but you had a bad experience and probably should insist to speak with the anesthesiologist before surgery, not the day of surgery. They may need extra time to research and prepare for your case. When I went to the hospital to talk to the anesthesiologist the front office kind of ignored that I had an appointment with him and just went through the pre-admission and then tried to tell me the appointment was done. I let them know that the ONLY reason I came up there was to meet him, not to fill out paperwork that I could have done the day of surgery! They looked at me skeptically but called him in. And then he looked at me skeptically for a bit, but started talking to me when he realized I was sane and not some weird lunatic.
So, be insistant - it can't hurt and it might help tremendously (like it did in my case). Tell him/her each issue you faced. PM me if your bad experience mimics mine and I'll give you specifics.
Chris
0 -
Trishia, great news! I skipped to the end of the thread first to see how Tre did today, rather than taking the time to read everything posted since I was last able to check in here. I need to reinstall Windows on my home computer tonight and have been busy copying files for a couple of days.
We heard from a couple of celebrities this week---so exciting. One was Andrea Bocelli's secretary, and she said they loved the guitar tank top and will be buying stuff from us. I can't reveal the name of the other, but her birthday is this month and her chef was looking for birthday cake ideas. We received a list of the celebs who picked up a gift bag, and everyone from Fergie to Elton John, Celine Dion to Taylor Swift, and many others now have our tank top. We did some new designs today for the Superbowl, like "Who Dat?" with a fleur de lis, and "Geaux Saints". I think some of our items will soon be available for purchase at St. Charles Surgical Hospital, with proceeds going to Hope Lodge--very exciting!!!
Stephanie, our onc's routine is manual breast exams and no imaging unless a lump is found. I haven't had anything (mammo, ultrasound or MRI) for almost three years now.
Spring, I think I spotted a nip question you wrote a couple of days ago. Was it answered? I'm three months out now and will be wearing the guards for another three months, then I am going back for my final revision. At least I think it's the last one! Dr. D said he was putting me on a 100,000 mile plan, so who knows?
2tzus, so glad you are going to NOLA!!
0 -
Greetings
Am sharing wat happened at my appt re eenlarged lymph nodes in case anyone else has this experience. Two weeks ago (two weeks ot op) my ankles swelled and I was at the ER so they could rule out a blood clot. the ER did a CT of my chest, among other tests, and found enlargd lymph nodes under both arms. Yesteray I saw my oncologist -- for a slght blood disorder--a whole other story -- and he said that enlarged lymph nodes after breast surgery was totally normal. so if you are tld that your lymph nodes are enlarged post srgery --have it chekced out several months later, but don't panic. It is the body's normal reaction ot the invasion that surgery is.
Brenda --for me, the entire month of January is like a blur, but it gets MUCH better. I have also been asked "Was it worth it?" and I am thinking, I am not even done with "it" yet since I still have two drains and stage 2 to go, but yes, it is worth it.
0 -
Ztus~ I meet anesthesia the day before during intake with the wonderful Sally
Then the day of I could ask even more questions and the next thing I know I was in my room. I did hear that I talked for a while..... the next day anesthesia came in chuckling once he saw who I was. I apparently should go down there for stage 2 with duct tape on my mouth.... I was there for 10 days total Now I am back to snow land we are expecting over a foot of snow starting tomorrow....0 -
Brenda.. I'm sorry to hear you are down.... I hope things look up over the next few days...
Jamie... what were you talking about.. did they tell you? LOL
Sandy.... I so do not want to picture Elton John wearing your rhinestone tank top but that is exciting!
Trishia... very happy to hear about Tre sailing through surgery
0 -
Holtbolt~ They wouldn't tell me but my sister said I kept taunting her telling her saying "I am high and your not"....when normally I talk alot but I WOULD NEVER say that..... So I can only imagine how bad I was by the time that I got to the OR that I do not remember....
0 -
LOL Jamie!
0 -
Brenda - Hang in there it will get better. Things always look better in time!
Plainjane64 - So sorry to hear about your friend. Glad she has you to help her though the process. Everytime you turn around, you hear of someone else getting BC. Glad your feeling better!
Jaimieh - I know your glad to be home! The good thing is that you can't be held responsible for anything you said!
Nordy - can't blame you about not wanting another CT scan. I had 2 last year plus rads and with stage 1 will be having another in March plus chest x-ray, bone density this month, etc. Haven't we been exposed enough! Just glad we don't glow in the dark!
0 -
Jamiah, You've got me scared now, I think I agree witht he duct tape idea for me too! I am normally a talker, so WHAT might I say under the influence???Yikes!!!
0 -
Everyone talks about the dominatrix outfit - you get that with SGAP right and how long do you have to wear it? Sounds like a terror!
0 -
Tammy, me too... I hope nothing inappropriate comes out...
Cat.... I'm wondering too... all this talk about how hard it is to get in and out of .. I'm wondering if it's unavoidable to appear naked in front of my caregiver once back at the hotel (it's my sister so .. weird)...
0 -
Cat & Holtbolt - You will have the pretty black bra on, so you won't be totally naked (or has this changed since '07, too?). Be sure to put your underpants on OVER the outfit, and remember to pull them down before you go to the bathroom. You will only make that mistake ONCE! BTW, I like the domanatrix outfit, and you may, too, once you can move better and have no more drains. But maybe this says something about me... LOL!
NSWTD - Are you still here with us? Have a surgery date you want Spring to list up at the top? With your name is up there, it helps everyone keep everyone straight!
Sandy - Glad to see you're back! I love having an excuse to peruse those celebrity mags, now, looking for anyone wearing your tank!
0 -
Jaimie - You look so demure in your photo. It cracks me up to think of you bragging to your sister about your being high! I guess we all need to be careful what we say on this forum, lest one of us blab about it once they start that heavenly white liquid anesthesia into our IV (or has this changed, too?)!
0 -
Whoop-Whoop! I am home sweet home (although I sincerely loved my time in NOLA)! OK - it will take me a few days to catch up on all the posts - so I may miss some things.....but here we go!!
Brenda - I am so sorry you are feeling down - it could be the effects if the anesthesia - I know I went through a truely dark period after one of my surgeries in July! Also - lack of sleep may figure in - you may want to ask for some sleeping aid to help you for a few weeks or so! Will call you!
Bettye - I am sorry I missed seeing you on Wednesday - my appt got moved up - and we were in and out of the center and on our way to the airport - I am thinking of you and hope you are doing well!
The domanatrix outfilt gives meaning to the phrase "pain in the a$$" - but it is doable - I figure it is a small price to pay for keeping everything compressed for awhile! And last night in my "sleep fog" I forgot to pull down my yoga pants before going to the bathroom!
I will never make that mistake again!One of the nurses showed me yesterday how to pad the inside of the 'dom' with pads so I don't get permanent 'tube marks' from the drain tubes - wish I would have known - she is going to call fairway and remind them to show how everyone how to pad - or - to drop the drains through the hole before zipping up (I am going to try that today!)
Stage II for me is April 23rd!! Ladies - I can't tell you how thrilled I am will my results - FAR BEYOND MY EXPECTATIONS!! I have fallen in love with everyone at the Center - as well as Dr. S ....."Dr. Delicious" as my friend Kim calls him!
Sandy - Congrat's on the Grammy's and the shirts!! I want one of the new ones!!
Holtbolt - you will appear naked in front of your caregiver - it is unavoidable - I have lost all modesty since this journey began! But really - it is no big deal.....really!!
Short story before I attempt a shower on my own...............While at the French Quarter on Tuesday I went to a shop called Sterling Sylvia's - great place to by silver jewelry! I was wanting to purchase some Fleur de lis items to take to friends back home - and one particular one caught my eye - it was designed by a 16 year old girl shortly after Katrina. In her words "Before the storm, the fleur de lis was a sybol tourists bought as a remembrance of the great city they visited, or what locals bought to represent their home. On August 29th, 2005, all of that changed.....It has become the symbol of remewal and rebirth for our city. Locals wear it proudly, more than ever before, making sure the message is loud and clear that "we are coming back, and better than ever..."
Renew, Rebuild, Rebirth.......that message is so personal to me now that I have had the New Orleans experience!! And the necklace is stunning!! I think you can all relate!!!
Pictures are coming - I promise!! (I know, you have all heard that before!)........OH - my toenails were a huge hit!!
....can we plan a Mardi Gras get together for 2011??? Ladies - we could collect some serious beads the way we are all l@@king now!!
xoxo
LouAnn
0 -
...ooops - one more thing....the last thing I said before going under (according to the doc) was.......who dat??
LouAnn
0 -
LouAnn~ I am sure we were at the center at the same time. BTW, I wore underwear over the outfit to the airport only to find out as soon as we got to the gate they were loading the plane. Well I insisted that I needed to use the bathroom before I got on the plane and in my hurry I pulled my pants down and peed with my panties still on. You should have heard my whinning because then I needed to get out of the pants and ditch the panties. Funny now though......lol....
0 -
Minn. I never got to see what color it was that hit me..lol... I talked to Dr. S, the anest. for a second and then meet the nurse anesthestis and he got me. I remember slurring and trying to talk straight and my bed moving but that's it
No idea what happened just know I came out the other side feeling like I look really good 0 -
Minnesota & LouAnn - Thanks for the info and I'll definately remember to put the undies on the outside of the outfit. And DROP EM before going to the bathroom!
LouAnn - Glad your home and doing good! Congratuations on your date for stage 2!
Renew, rebuild, rebirth - yeah that's exactly what we've done!
Cat
0 -
Ladies, Your NOLA storys are funny.
Good to hear 2 of you are home.
Brenda- Hope you are doing a little better today.
Pam
0 -
Ummm...just don't wear underwear with the dominatrix outfit. I didn't. Live on the wild side. It is fun.
0
