NOLA in September?
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Motherandchild - now you see by klanders how truly we all practically hold our breath waiting to hear from the next one up on the other side! Prayers, thoughts and best wishes are all out there for those going in and hopes for reports on how they are coming along!
I was the same way on how many yoga pants - think I wore one and stuck to long skirts and long travel dresses for stage 2 but for stage 1 I packed one for every day I planned to stay.
Best wishes to you! Enjoy the icee!0 -
Klanders so happy you are on the other side as we call it and hoping all your questions get answered to your satisfaction. Marty said it well that there isn't a grade given for how quickly we advance or move around or even come off pain meds and pushing ourselves too soon is not great either! I've had weird nerve 'awakening' hoping that's your vibration problem. Mine came and went periodically for a few months.
Continued good thoughts Nd prayers your way !
Hug
Catie0 -
Its a free country. Do what you want to do If you want to go bach then go back. People
don't have the right to judge. And, if they do its their problem and not yours. Don't let them weigh you down with their own uncertainty.
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Mother, you won't need much for clothing! No icees for me. I stopped eating most sugars when the cancer was diagnosed so it doesn't even sound good to me. But honestly, no food sounds good to me right now.
I'm trying to be more positive today. The good news is that we have all these wonderful women who have made it so we can too. I am still in the hospital. I had ambien last night and that was great. I don't know if I'm going to the Hope Lodge this afternoon or Monday. I have my post op appt on Wednesday and fly home Thursday. I don't think that will change.0 -
Thank you Klanders...
Just realizing I don't have a list of questions to ask Dr. D. Is that strange?
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No, not strange. If you are on this board I bet that means you've done a lot of research!
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Klanders, it is so great to hear how you are doing. That nausea is the worst. Everyday gets better especially when getting off pain meds and antibiotics. Maybe protein drinks will go down smoother than solid foods.?? Take care and let the healing take over.
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Klanders - You Go Girl!! I can't believe how good you sound. I was thinking I probably won't even be able to figure out how to turn on or have the strength to open my laptop after surgery. Glad to hear it'll be better than I think.
Mother - Tons of positive vibes heading your way! You're going to do great.
Marsha1970 - How are you doing? All packed and ready to roll?
I'm getting so excited about all this. I just want it all done. I can't wait until I see the words "Welcome to the other side!"
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I have a question that I hope doesnt seem too ignorant. I've been seeing some talk about HRT. I was under the impression if you are BRCA you shouldn't be taking any of this? I had my ovaries out over 2 & 1/2 years ago and NO ONE, not my gyne, not the surgeon that took my ovaries, not my regular Dr, nobody has ever mentioned replacement therapy. I have been going through horrible hot flashes (to the point of throwing up) along with all the other fun symptoms after having your ovaries are taken over night. I worry about what its doing to my organs, bones, etc. Can someone enlighten me? The worse part of all this is I work in a hospital and you would think I should know better.
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Barb: visit http://facingourrisk.org
You'll find some good advice there.0 -
Barbmal5- I am not an expert on this but the place to get good, up to date and accurate information about HRT after a prophylactic mastectomy in a BRCA positive setting is the FORCE web site. If you don't find a very specific answer or want more info you can contact Sue Friedman (founder of the organization), using the email, listed on the site. She is very responsive.
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I have had the vibrations. One of the weirdest parts is in the groin area. Like a phone is vibrating in my pants! Weirdest feeling. Clearly some nerves were affected there! But in the breasts too early on.
I use bioidentical estrogen patch for menopause. Have been told it is ok to do, particularly since I don't have my breasts. But doctors vary on this, especially if you have had cancer and it was a certain type. However, with hot flashes that intense, I would seek a womans health specialist who can help with hormones.
Mother!! It's almost here! Soon you will feel such relief.0 -
I've been having vibrations in my groin and I haven't had the big surgery yet. Not sure what the heck that is about. I keep thinking is thst my phone? Still not recovererd from node biopsy so maybe it's an anesthesia thing. That's what they are blaming everything else on...fatigued, dizziness, no energy.
Barbmal5. I would think that HRT defeats the purpose of a prophylactic ooph but I was estrogen positive. HRT has many risks. I was hormone positive and would never consider HRT but I do use estring although its contraindicated. The risk is small but the impact to my Quality of life is huge by taking it. I decided the risk is worth it.
No I am totally not packed but I've started. I fly out Thursday morning very early. So much to do in these last 3 days.0 -
Barbmal5. Have you talked with your onc about your flashes? Effexor helps some women and its not a hormone drug but it is a low dose antidepressant that helps some women.
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I've been posting from my phone. I got kicked out of the "spa" tonight. Bummer! Hope Lodge is nice but it doesn't have the hospital bed and you can't eat in the rooms. But the price is right so I cant complain. I'm all bent over so there's no way that I can sleep flat. We are improvising with lots of pillows. I've picked up a cough from somewhere. Taking my ambien now. It's my new best friend!
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Klanders, hope the lodge is comfortable enough. I was thinking I wouldn't mind an extra day at the spa if I could still go home on time.
So are the pillows at hope lodge fluffy and can you get like 8 of them? If not I'm going to go buy some cheap pillows. Usually hotel pillows are sucky unless its a really nice hotel.0 -
klanders,
I stayed at the Hope Lodge after my surgery and they gave me and my aunt a room with double beds that you could raise the head and foot like a hospital bed. I didn't request it, the center is the one that made the arrangements. It sucks that you can't have any food or drink other than water in your room. When we were there they sent out a letter warning people not to be taking food and drink to their room. I guess they had caught someone sneaking food or drink to their room from the cameras they have posted.0 -
Klanders..happy you r doing so well. Make sure you r doing your breathing exercises! That could account for the cough
Well today I felt great...the seroma is still there but the pain is diminishing everyday. 8wks and I am finally getting some relief..woot woot
Maggie0 -
Effexor is what was recommended to me for hot flashes but I haven't really needed it.
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Klanders.. I had a little sore throat and cough after surgery also. It's from the tube they put down your throat. There is probably fluid that's needs to come out of your lungs from being under for hours. I coughed for about a week. It hurts! Can't stress enough to keep drinking that water.
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Ok you Miralax girls. How many days before surgery did you start taking it? My doctor gave me the go ahead.
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Cherrie - Starting 3 days out should do the trick. Take the stool softener as well. Just to get ahead of the curve.
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Klanders, so glad you are doing well and hope you get some rest at the Hope Lodge.
As for HRT, I am BRCA2+ I have done so much research on this, but there are so many different opinions. I found the risks of taking some sort of HRT outweighed the risks of not taking them since I have had my breasts removed (bone density, sex life and just an overall quality of life).
The risk is very minimal after having a PBM. For me, it's a quality of life issue. I had to come off the hormones for my stage 1 and I was miserable!!! I begged Dr. D the day after surgery if I could go ahead and start back (the nurse said I couldn't start back until after I flew home). The night I returned to my room after 10 1/2 hours of surgery, my room was a meat locker (the nurses were shivering when the walked in) and I made my poor hubby run to CVS or Walgreens to get a fan to keep blowing air on me. My hair was falling out at an alarming rate and I was just miserable.Mother, sending positive thoughts your way!!! You are going to do great!! You're gonna love Dr. D
You will be on the other side of all this soon!!Hugs to you all!!
Chelle
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Marsha, they have a lot of pillows in the room (i think 8) but I think we are going to ask for more. I got about 3 good hours of sleep last night. When I woke up (to go to the bathroom and because I was hot and in pain) at 12:30 AM I took my oxy narcotic and flexerall for the spasms in my back (from being stooped over) and after that I only slept a little and it was very fitful with wild dreams. I started in the recliner and then moved to the bed using lots of pillows (which I find to be very fluffy and nice). I'll have to ask about the room with the hospital bed.
Another question: I'm developing stretch marks on my stomach. Did any of you get that and did the docs have a way to get rid of them?
Once the IV comes out they send you home that day or the next. They couldn't justify to insurance keeping me longer.0 -
Thanks for all the responses about HRT. I did go on Zoloft at one point because my cousin, who I believe saved my life, went on it for depression after being diagnosed with Stage 4 Ovarian CA, and noticed a decrease in her hot flashes. It did seem to help me for a while but I suck at being compliant with taking pills (maybe that's where those 3 kids came from!) and quit after a few months. They have gotten better over the past 6 months but I'll still check out FORCE.
Positive thoughts to all those with surgeries coming up!
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Klanders, it's really not called a hospital bed. But they will probably know what your talking about. I don't know how many rooms have with these beds. But hopefully they can find you a room with them. Sure did come in handy.
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I believe they are called adjustable beds.
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When I was at hope lodge my bed was very uncomfortable and had like 2 small pillows. It appears they have made some improvements. I was told drew breese was donating hospital beds so maybe these adjustable beds are from him.
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klanders, so good to hear that you are feeling better, but I hope you can get some real sleep! I found the beds at Hope Lodge to be very comfortable. The rooms had just been renovated. The no-food-in-the-rooms rule is a pain when one is recuperating from surgery and largely bed-bound, but as a Southern ex-pat I know the cockroaches are nearly impossible to fight! I was incredibly fortunate to have an old friend living 2 blocks away from the Hope Lodge, so I did all my cooking and lounging there and slept at the Hope Lodge.
Thinking about you, mother, and hoping you are enjoying some NOLA time and getting a good visit with Dr. D today! It's nearly impossible to not worry but hopefully seeing the facilities and talking with Dr. D, Jeanine, and Laura will put your mind at ease.
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Cherrie, three days prior, full doses! You'll have no issues. I kept it up afterwards but started to ween off as I felt things were "going along fine".
Klanders, I had that vibrating. I think it is the nerves reconnecting.
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