NOLA in September?
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Hey Jen, Welcome Home! I preferred the recliner and would put pillows under my forearms and sometimes a small one under my knees. I hope you find what works for you quickly so you can get much needed rest.
I did arm exercises taught by the O.T. at the Center. They were gentle exercises but I liked knowing I was doing something. I have not seen a P.T. but have read about others on this forum who found them helpful/necessary. I just did the walking bit and, for me, at week 6 I felt more normal walking - before that I felt fragile & would get teary. At week 8 I began getting back to my usual pace & distance but I would feel REALLY tired on some days. I started doing push ups 1 week after my last drain came out. Running still feels weird due to the large areas of numbness I have on my hips and thighs (& I have knee issues!) so I walk. I rode my bike and played a little tennis last week - I am trying to understand the "listen to your body" mantra. I am a believer in walking, though, the swing your arms, lift your head high, positive thoughts, all over good feeling stuff. Call me if you want to hear about the simple arm movements, but do e-mail the Center and check to be sure you are cleared for it - I do not want to give bad advice! Peace to All!
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Nordy, Please let me know when you are in Boise. Karen and I would like to try to meet you. Peace, Tamara
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Jen.. I preferred the bed over the recliner... I had lots of pillows and was very comfortable.
About PT.. I didn't have it or need it
About exercising... just be careful. Remember you have your weight restrictions and reaching too far is not good... so Dr D suggest the wall walking so you can track your improvement and keeps you from getting a frozen shoulder... but if it feels uncomfortable, then you need to stop.
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Jen, there's a terrific book called "Now What? A patient's guide to recovery after mastectomy" http://www.amazon.com/gp/product/B006LLCQB8/
It has a whole section on exercises and when to start what that's very good. I recommend it. But don't rush yourself too much - there's time and you need to recover. You can start PT at 4 weeks. I swear by it. I was amazed at how quickly I regained my full range of motion once I started PT. I just started it again post stage 2 yesterday and I know it's going to help a lot.
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Jane123- I understand everyone's body reacts differently but when you mention running did the Center mention whether you could resume it if you wanted to? I have gotten into running over the last year and have a hard time knowing it may not be something I can enjoy again (never thought I would say that...used to detest running). I am looking at a PMX w/ hip flaps and hope to be able to resume my normal physical activity after my body is recovered.
In general have most of you been able to resume your normal activities after fully recovered?
With time does some of the numbness go away in the hips & thighs? I know the breasts are another story but curious what some of the experiences have been?
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Kerry.. I definitely have numb areas on my butt and thighs but it really isn't that noticeable... about activity, I do Zumba, spinning etc.. I am not a runner so I can't comment on that, but I can all other activities. It did take a while.. I remember during the NYC Avon Walk which I did 3 months post stage I and my butt felt weird when I jogged a bit... but since then have had stage II and recovered from all of it and it feels normal.
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KerryA, Yes, the Center o.k.'d running by saying that I should listen to my body and the general rule for activity was wait until 1 week after the last drain was pulled so I would be "sealed" I assumed. I had difficulty with the listen to your body stuff because I push myself pretty hard. Post op, I would do too much initially and then would be tired or sore so I learned pretty quickly to take it easy & I tried to be understanding with myself. Some days were better than others.
I was concerned about being able to do my usual exercise activities, too. The Center assured me I would return to my usual activities and they are correct! I had written off doing much until 1 year post op but at 3 months I am back to doing everything I used to do, although I take some naps... I think that running will feel better after stage 2 when I lose the little bunny tail/dog ears that remain on my backside. I am glad Betsy experienced this improvement.
NOLA told me it can take up to 1 1/2 years to regain sensation in the hip area after the last surgery. I think it is a bit unsettling when the numb spots are touched but it does not hurt at all and I think I will continue to get used to it if it does not improve. To me it is a small price to pay. I am thrilled with my NOLA results & recovery. PM me if you want to talk. I am happy to help. Peace, Tamara
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I had my stress echo today and because of my broken leg couldn't do the treadmill, instead they gave me an intravenous drug that made my heart race, very strange to be lying on a bed and feeling your heart race like you were running up a mountain!
I was hoping to be off crutches in NOLA but might have to bring at least one. Did someone say they have walkers at SCSH? That would reallly be helpful for those first few days post surgery.
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Question: I'm four weeks out of stage 2 today and they told me I could take a tub bath at four weeks, but I still have a couple of spots where stitches are poking through. Would you wait for those to resolve before bathing? I love my baths and have missed them terribly but I don't want to risk infection at this point. What if I bathed but them put betadine or bacitracin on those spots after?
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Why don't you clip the stitches?? I held scissors right up against my skin and clipped.
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Eva - I have always advised all of my patients to wait until the incisions are healed before immersing themselves in water and personally, if it were me, I would certainly wait until all the incisions are healed. Putting betadine or Bacitracin on the areas afterward would treat any superficial area, but if water managed to get through the opening, there is no guarantee that those topicals would be sufficient to counteract it. I know it is hard to give up taking a bath! I used to take one every week, but now with lymphedema, I mostly avoid soaking in the tub - and I miss it! But for you, this is just for a short period of time! It will go by quickly, and you have done so much to get to this point! Hang in there!
Esmerelda - I am glad to hear you made it home safely! I don't know what you decided on the ibuprofen, but you are smart to double check with the Center, as it does increase bleeding times.
Okay, since we are on this topic and you all know how I am about inserting my 2 cents...
--- If you research most of the narcotics that are given, many of them are combined with Tylenol/acetominophen - which is a pain reliever, but NOT a non-steroidal anti-inflammatory (NSAID). Although both ibuprofen (a NSAID)and acetominophen are both used for fever and pain, they are in separate classes of drugs and have different properties. It is always smart to double check with your doctor - maybe it is okay with one doc, but not with another, or maybe because of a patient's personal medical history, bleeding tendencies, other medications they may be on (which could either have a synnergistic or antagonistic effect), etc. -- what might be okay for one patient, may not be okay for another. Always, always refer to your attending MD and their nursing staff prior to changing any of your meds post surgery!
Glostagirl and Katiejane - I am excited for your upcoming surgeries! Thinking of you both as the time gets closer.
Kerry - not only do I do everything I did before -- I do more! As we speak I am trying to figure out what other kinds of nutrition I should take in tonight as I prep for a triathlon tomorrow morning. This is my 5th one and I did the first one 2 and a half months after my stage 2. The key to all of this is letting your body heal. The activity levels increase with time, but post surgery - your main goal is healing! I am guilty of doing too much too soon. With my hip flaps, I posted signs all over the house reminding myself NOT to screw this up! In the grand scheme of things, this is a small blip of time. It will be worth it in the end!
To all the ladies that have just had surgery or are just about to, I am sending all positive vibes your way! I may show up less often, but I haven't stopped caring!
Jane123 - I will PM you when it gets closer, and when we have a definitive date, but somewhere toward the end of the month! My kids love that restaurant that was featured on the diners and dives ??? It has "trailer park cuisine" (not my words!) Lol! Do you know the one? With the car they can sit in to eat? Would love to meet up with you there!0 -
Jannelle...springtime is not on the boards right now because her mom passed, but send her a PM and she will add you to the list... It just might take a little while... Also are you on Facebook? We have a NOLA group.
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Nordy... I agree about the meds... When I might say I did something that worked for me, try it... I do mean try it after asking the docs... That is for sure my intention as I am sure for everyone... I think this also applies to physical activity, bathing, pulling drains etc... All that we share is a retelling of what worked for us, and should be the jumping board for a conversation with the doc, not a directive.
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Thanks, everyone for your input. I spoke with the center and have changed over to ibuprofen, which seems to be working fine. I slept on the couch last night and was
Very comfortable!oght end up returning the recliner and wedge pillows too.
I seem to be all over the map emotionally. I have good moments and weepy moments - all normal right? I also have been having this weird tingling sensation on the top or sometimes the back of my head. It started about a week before surgery and I told Dr. Stollier about it and he said it sounds like stress or migraine related, he did not seem worried - said I need to stop worrying about brain mets (because of course that's where my thoughts go!). But, it's still there (comes and goes) and it increases my anxiety... And my feelings about this whole cancer bullshit.
I'm sorry - I know this has nothing to do with the NOLA thread, but I'm struggling right now.
thanks for listening! 0 -
Jen, I am sorry you are having a rough time. You and your daughter will get through this. Keep reading to her so you can be physically close and if you get teary remind her how much you love her. I know sometimes I cry with joy, maybe you can focus on this with her? I think it is natural to cry a little and if you can comfort her and tell her you are healing she will understand. Maybe you need to have a big cry with your husband or a close friend to get it out. Be mad at the unfairness of all of this, etc. instead of trying to hang tough for a little while - you know a pity party with someone who loves you no matter what. None of this was in my game plan either & change can be hard!
Nordy, Thanks for the med reminder. The trailer park cuisine, Donny Mac's, just closed but a new restaurant is in that location. A unique deli run by a well known caterer from our local grocery co-op that sounds like it has some yummy offerings if you want to try it. We could also go to Tepanyaki - it is a Japanese restaurant that prepares the food in front of you - my kids think that is fun. Peace, Tamara
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Sharing a website I found with a nice selection of coupons for discount rates on restaurants and attractions. It's a PDF file that you can print and take with you. The coupons are good for travel through August 31st. Here is the direct link to copy and paste into your browser - http://www.neworleansonline.com/tools/coupons.html
If the link doesn't work, here is another path.
http://neworleansonline.com click on plan your trip and choose coupons from the drop down list. I thought the itinerary suggestions found in the same drop down list were very helpful too.
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You're right, Tamara - I think I am still angry, but then I have moments like just now - a good friend came over and I was hearing all the things I was saying to her... nope, I don't have pain (!), yes, I got to keep my nipples (!), yes it's all my own skin (!), yes the pathology is good - clear margins, etc.. Man! Talk about gratitude!! I have a ton to be grateful for.
So. I'm going to stay focused on gratitude today! I am super grateful for you, Tamara, and all you amazing ladies! It's gorgeous here in Michigan and I hope it's gorgeous where you all are!0 -
P.S. Eva - I am totally getting that book. Thank you!
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Glad you are feeling better, Jen! No pain??? That's so fantastic.
Nordy, I hope you are having a great day at your triathalon! So amazing!
Eva, I am sooo going to miss my hot baths. They are so good for my moods and cold feet.
Glostagirl, I'm sorry to hear that you are dealing with an injury amid all this. Hope to see you soon!
I leave for NOLA a week for tomorrow. Feeling the butterflies. The to-do list is getting longer and the time is getting shorter! Hearing the stories of women getting through it, walking in the Quarter a week later, and making it home is very inspiring.
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Hi, I hope this isn't too off topic
For those you having surgery for free flaps or have already had surgery, and are considered "thin," did any of the NOLA docs have you go on a special diet to try to gain as much weight as possible prior to surgery?
From reading their research papers and posts from these threads, it sounds like it IS possible for thin patients to have some sort of free flaps without implants. How about those of you who had Stacked Flaps? Are those more intended for thin patients? If you had a stacked flap, did you need to gain weight per the docs?
Thanks for sharing your stories -- I'm going through a rough spot and support from your posts have been extra helpful lately.
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Pink Heart.... I have stacked flaps and no need to gain weight... and for the very thin, they also have not been told to gain weight. The doctors are very health conscious and I don't think would suggest that. They can find fat on even the thinest of women without adding any extra weight.
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I was released from the hospital today. Even with help from my sister, it was absolutely exhausting to shower, pack, ride to the Homewood, etc. But it was nice to get rid of some of the tubes & IV line.
Yesterday was the most difficult though, having to have a nurse help me bathe and dress. I'm not ready for my husband or anyone else to see me. I got very upset at the thought of seeing my new breasts (even though the nurses and my sister say they look great) or anyone else seeing them. I think was just overwhelmed with everything and finally lost it and had a big old cry, which must have been building up for months. I was also having a hard time with the pain meds, which caused me to see things and talk to people who weren't there. KSue and I didn't reconnect again until last night when she stopped by. My brain felt so foggy and she's still struggling with nausea. The power of suggestion is ironic... no sooner did KSue leave my room, (mentioning nausea) I became violently ill (meds on an empty stomach).
Esmeralda, when I saw you, you looked amazing! Hopefully in a few days I'll feel as good as you looked.0 -
Weehaaaa! I did my tri this AM. It was COLD. Air temp was 49 degrees at start time and water temp in the mid 60s, I think. Anyway, this is the first time I have gotten out of the water and had my leg cramp up, so I would say the cold definitely made a difference. As for my time - I improved overall by a minute and twelve seconds. My swim and run times were both improved from last year, but my bike time - which is my best event - was actually a minute slower! And I am NOT happy about that! But overall, I cannot complain. As always, it was fun! But I think I need a swim coach. I really stink at swimming.... And I realized today that I hate swimming in a wetsuit. I don't care what they say about it making you slippery... I feel like an aircraft carrier when I want to feel like a submarine!
Pinkheart - the docs at the center do not generally encourage weight gain, but I don't know that that is always the case. Best just to ask when you send in your pictures. They are pretty good at assessing where your best donor site is via pictures. You will be great!0 -
Jenifer... It is indeed exhausting... Do know that it does improve... in a week, this time will be a distant memory (and with the fog, you may not even remember).. I had a lot of trouble remembering things and keeping things straight while on meds.. so I felt mentally so much better when I stopped the narcotics. I also couldn't show my husband for a LONG time... some women will show their husband's day one, but for me, it was months.. I wanted to look totally normal... so I guess everyone is different.
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Betsy~ thanks kindly for your input - you know a lot and been through a lot there and still going for more surgery?
I just ran across several threads on other discussions where patients are being told they are too thin for flaps and have to have implants, which is what Mayo Clinic told me last summer and sold me on the immed recon with direct full implants even knowing I'd have to have radiation . . . .
So I started thinking I'm way to thin and would get turned down. I'm starting to get stressed because NOLA docs are the end of the line -- my absolute last hope to fix my latest disaster with implant failure and loss. Having a straight mastectomy-no recon, looks much, nicer than having a radiated full size D (when wanted C) implant that tore open incision after revision surgery and now removed. Shriveled up, chunks of scar tissue, and axillary cording even uglier growing into it. Most importantly the pain - physically and mentally. Though I know there are others sisters worse off that I pray for - I still am fortunate that I did not have infection set in and have wound vac.
One more question -- I sent my med records and numerous before/after PS studio pics to NOLA doc. I was told to also take my own pictures of all parts of my body (no face) and email as well. I guess they need to see what skin I have they can possibly use. I feel kinda' stupid asking this but -- was I supposed to take the butt shot with bare buns or a thong? I was in my teen daughter's bikini bottom!
So thankful for a perfectly beautiful summer day here in Indy.
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PinkHeart...Have you spoken with them? They emailed me a HOW TO for the photos.. I didn't actually send any as I just went there to see them in person, but they do have instructions. I do think the more they have to see the better it is for them... And yes, I am planning another surgery, but not until 2013...
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Hi pinkheart, you are asking all the right questions and folks like Betsy and Nordy have so much knowledge and experience with what your are dealing with. Best wishes to you. Oh - regarding the photos - I think the backside photo is without underwear. Just pull those suckers down and have someone snap away! (Weird, I know!) Get those pics down to the docs and they will let you know about whether you have "enough." I think Tamara (Jane123) is/was tiny. The docs said she was one of the smallest - but by no means the first! (Tam - forgive me if I'm putting words in your mouth,)
Nordy! Holy cow!! Congrats on an incredible accomplishment today! You are SO inspiring. Go get that swimming coach, girl, and kick even more butt next time! I've always wanted to do a triathalon, but I am not a swimmer. Maybe something to set my sights on once I'm healed, etc.
Jennifer, I SO get what you are saying. As you can see from earlier posts, I have had several meltdowns since returning home. As much as being home is SO good, it brings up so much other stuff... Do I want people - friends and neighbors - to see me right now? (or me to see them?)... Whenever I use the bathroom or change clothes or drains, I see myself in the mirror and i feel ill about what my body looks like. My boobs look SO weird - and feel weirder...sort of dead. Ugh! And, i think I'm still grieving. BUT - everyone in here who has been through before us has said: This too shall pass. Hang in there, sister and I will too!!0 -
For what its worth... last August I had scars on my breasts, my butt, my abdomen AND I was bald... I was just lovely. It all improved... My scars are practically invisable and I have a ton of hair. Those first couple of weeks are hard, maybe more mentally than physically, but you are at the worst part of the phase. I found the first few days at home hardest as you don't have the nurses there, things are sort of normal, but not... and you are EXHAUSTED. Take care of yourself, go slow and look toward the future which will be brighter.
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Nordy, you are simply awesome!
My sister doesn't have enough fat even for stacked flaps to replace her current implants, so if and when she decides to have BPM with Dr. D, she's limited to implant reconstruction. If she were to try to gain weight to have enough for flaps and she lost it again, the breasts would shrink too. Not that I feel sorry for her for being thin!
Just wanted to clarify something from a few pages back:
Dr. Stolier is employed by the Hospital
Dr. Gray and Dr. Lagarde are employed by the CenterI'm not heading to NOLA this week after all. In January, my older cousin Debbie lost her 32 year old daughter to toxicity from a combination of prescription meds. She left behind two little girls...it is really a tragic story and my cousin is still really suffering. They live in Colorado and I've only seen her once in the past 25 years, but she is coming to my area next week. I talked my sister into pulling her girls out of school and my brother is taking a day off from work, and we are going to surprise Debbie with a little family reunion. Her sister Gayle is going to bring her to meet us and she will get to meet my new niece Jade and my brother's wife...my sister's girls...maybe my daughter too...it's going to be incredible to all be together. We grew up around the corner from them and were so close growing up. My New Year's resolution was to take time to see out-of-state family and I'll be doing some traveling this summer to make that happen. Unfortunately, NOLA will have to wait, but we shipped fliers yesterday so we will have a presence at the bridal show without having to be there.
Wishing you all quick and uneventful recoveries!!
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Sorry, I haven't posted. This has been difficult. I moved to Homewood on saturday evening. I am having significant pain issues in the hip area as the pain ball was removed today. Also have had lots of blistering and bruising particularly on one hip. Suggestions?
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