NOLA in September?
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KBodie, I'm so glad you are feeling well cared for. I did stay one extra day. Part of it was a logistic thing with my caregivers exchanging places. But most of it was that I was simply not ready. Please stay if you need to. I'm looking forward to us being surgery buddies in Dec!
I sort of had a backup doctor. A PS I saw locally actually referred me to a NOLA grad who he took care of for some wound care. I didn't set anything up with him, but I knew he'd take care of me if I needed anything. Otherwise I did not set anything up. It turned out I did not need any local care. I even pulled my drain myself (and I liked it!!!).
I very much enjoyed reading about the Versed experiences. I did some googling and there are some passionately vocal people about not liking Versed! That being said, I will ask to be able to see the OR. I'm also going to ask the anesthesiologist about what went on Stage 1, as sugery started at 7 and I 'woke up' on the way to my room around 6pm or so. And I was told surgery was about 4 hours? Husband said it was more. It just seems like a long time to wake up. Plus I do remember vomiting while in recovery. Didn't bother me though!
I've always love New Orleans. I vaguely remember passing though when I was a little girl. My parents said I loved the French Market and the food. I didn't go back until college, when it was half of a road trip, with 2 college friends. The next time was for a friends wedding. My husband's best friends's wife grew up in NO suburbs. A year or two after I was married we went back for another vacation. I think St Louis shares history with NO linked by the Missisippi River. Anywho. Hubs is not to happy he's not going with me in Dec. But my sister is happy to go!
Michelle, good to see you here. Someone here should be able to give you a little insight regarding rads and DIEP.
Running, keep taking care of yourself. It's hard to rest when you want to run (or so I hear!). I was able to swim a little at around 4 weeks or so (a week after drains out I think) and it felt gooood. I did notice that if I felt particularly weepy or fatigued I was pushing myself too hard. I spent a lot of that time reading. I also started physical therapy at 5 weeks which helped immensely, getting that belly scar loosened up and working on the mastectomy muscle tightness.
This thread has been on fire! I love you ladies! The support here is amazing.
Oh, one more thing. I haven't used anything on my scars. I figure they will be opened up again for Stage 2, plus mine healed very nicely. I will be using something after Stage 2, but I don't know what. Brown tape? Kelocote? I'll leave that decision for later.
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LuvRVing - I went for my consult in NOLA after my lumpectomy, while I was having chemo and already knew that I would need radiation. I was encouraged to complete my cancer treatment and wait 4-6 months after radiation to have my hip flaps. You can call NOLA and speak to LIz and tell her your situation and then she'll get back to you with information!
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Kbodie, I also stayed an extra night and was very glad I did. Once I left I was truly ready and the transition to the hotel was much easier than it would have been had I gone earlier.
Like w pain meds, there is no prize for pushing yourself. If you feel more secure staying another, then be kind to yourself and do it. Warm wishes.0 -
Thanks everyone regarding backup. So I went and saw my super cool PA today. She seemed to know a bit about DIEP and NOLA. She is absolutely happy to have me come in and get checked out by her, pull drains, check wound...yay
I also called a local PS here that does some recon, I had to leave a message explaining my situation...if he wants to do follow up that would be great but if not I think between my PA and NOLA I should be ok. I hope they dont find that rude that I just 'cold called' him, but I explained my situation... so hopefully
LuvRVing ~ cute screen name !
Ok...so my 1st and only expeirence with New Orleans was ...errr. blecky. We were there during 'Decadence Week'... ummmm. ICK. The streets were full of men doing sex acts with each other. I.am.not.kidding, literally thousands upon thousands of people...the streets were packed just like at MardiGra. ...now Im not a prude nor do I care bout gay or straaight...but I dont want to watch real life porn happening in front of my very eyes. every single place I looked. So I have never wanted to go back. I hear your stories and know there is another beautiful, elegant side to N.O....but I just might be scarred for life!!! lol
Sorry but I had to share.
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Maggie Santa Monica...hope you are doing well!!!
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You guys are all so great. Eve....you are awesome. And I LOVED your article and relate far too well. Umm yeah so on the whole depression topic.......Soo true. And it was probably an issue for me intermittently before all the fun started. I had read an article in CURE magazine that said a lot of what your article said Minn and a friend at work who had another form of Ca came up to me after lumpect/rads but before I decided fully to trade up. When she asked me how I was doing I said the same thing..."should be great but I can't get it together" and started tearing up. Add in the Tamoxifen and Oh my! I could go on but just know that same friend handed me a card for a counselor who helped me tremendously and so did effexor. I continued to see the counselor throughout the whole decision process of moving forward w/ BLM/recon, then the planning, the lining up support, the dealing w/ work, family, coping, etc etc....This counselor had a lot of experience w/ Cancer pts. I noted yesterday at UTSW they have Cancer psychologists which is pretty new but really needed....I just needed the help for a while(like a year or 2? lol!) . I know I can see her again if/when I need to. We know...It is documented that support groups for women w/ breast cancer increases survival. And I didn't really have reliable support from my family so it was paramount that I HAD and continue to HAVE breast friends. I was so planned out post stage one(mine was technically prophylactic). I didn't start sinking until about 4 weeks(post stage 1-I think I was so relieved to have the time bombs off my chest I was euphoric initially).....but then I just was zapped. There were daily naps and Oh yeah the going back to work was like learning how to drive. But I just had to get thru and get to stage 2 before the end of the year. Then post stage 2 it was sort of another let down. Back to work full time after another long stretch off....and there I was all; "Now what?" almost all over again.....it is ALL SUCH a process! And time is your friend but while you're waiting for time to pass and feel like yourself again be good to yourself, don't forget the vitamins and know that things aren't going to be settled physically for a while so don't check the mirror too often. It's good to have someone (like a good counselor) to help you if you're stuck. And many of us know if we've been stuck once our brains can revert back to that easier like almost subconsciously so it is OK to ask for someone and/ or for some chemicals like effexor. Sometimes simply the act of making the appt or refilling the script helps because you're DOING something to get out of the black hole. Ok, I'm stopping but I've lived it and you really WILL feeli like yourself(but really BETTER) again-promise. Ok-going to go burn some butter. TX OU wkend....go longhorns!
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I did have doctors semi lined up for after care, had a lot of problems, but NOLA helped me via phone and internet, until they decided to fly me back down... So, its good to have something lined up, even with just a Primary doctor who could steer you in the right direction...My local BS also said she's help if need be.
About staying extra days... In July, I had a low grade fever and said I didn't want to leave till I was fever free for 24 hours... they were fine with that.
I think Decadance Week this year was during the tropical storm Lee... it was just starting as I was leaving town Sept 2.
Paula... I also have not used anything on my scars, assuming the same thing, that they will be opening them up anyway... But will they open all scars?? How do I know now? If they aren't opening some, I would love to use the tape or something.
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LuvRVing,
So you have had BMX but no rads yet, but you will need RADs, I think I got that right.
So I would also encourage you to call Liz in NOLA and talk to her. But here is my take on this.
I checked locally and was told I didn't have enough for even 2 A cups. In my initial consult with Dr. D, he was concerned about the amount of fat I did not have and didn't want to radiate it. So when I had my BMX in NOLA, they put in temporary implants with alloderm (all one step with the BMX) to get me through RADs. I had the rads and waited 6 months for my DIEP/GAP stacked (in NOLA they can take fat from both DIEP belly and GAP lumbar/back/butt and stack them).
I know that if you have plenty of fat, NOLA will do the recon prior and "over stuff" the to be radiated side to account for any shrinkage that may happen.
What they would need to do is to see your pics (they are amazingly accurate at estimating the amount of fat from pics!) and then tell you what they could do.
In any case, whether you can do it prior or not, I encourage you to get with the NOLA staff as they are the world experts. they can tell you if your insurance is in network or not, etc. If there is a way you can go there, you will get the best result.
Hope this helps.
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Thinking of Maggie: hope you are doing well!!
Oct 7 - MaggieSantaMonica - Stage 1 hip flaps with Dr S., Fairway, NOLA.
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KBodie, Hope you decided to stay. I stayed an extra day after both Stage 1 DIEP and 2. Both times I just couldn't imagine getting up and going, but a day made a big difference. Sounds like you really need the care. There is no reason not to stay! Each day they request an additional day from your insurance, but it's pretty clear you need to be there and I don't think insurance ever balks at this point. Make sure your pain meds are all set. After I got out and started paying attention , I realized that the amount of Lortab that I'd been taking in the hospital had too much acetominophen per day and I had to cut my dose in half , leaving my pain only half as covered as what Id been used to.The nurses would always say " do you want one or two" , and I would say "two!" We got it worked out pretty quickly, but it was rough being just out of the hospital and suddenly taking half as much pain medication. Any problems, the Center will get right on it and even arrange for that big black car to go pick stuff up at the pharmacy and bring it to you. You'll feel stronger every day!
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Betsy, No they won't automatically open everything. If scars are looking good and the area is only getting lipo'd they won't revise them. My breast incisions were opened for the nipple construction-- but I have the kind that go straight across mid-breast. Yours are probably in the inframammary fold(?). My DIEP scar wasn't touched. (I do have several new incisions, however...)
I dont know that there is any real data to show that the various scar treatments help, or if one is better than another. It's a hard thing to study. It may have more to do with your genetics and the location of the scar.0 -
KBodie- I second the motion that if you feel more comfortable with the care you are receiving from the nurses, you should stay. I remember the nurses telling me I could stay longer as the 3rd day I was having trouble holding down food and oral meds. Dr. S took my 3 drains out one week post op before I went home so perhaps he is doing the same for you.
Running-we're just about 3.5 weeks out of surgery! YAHHHH! I'm still sleeping on my sofa chair until 4 weeks then I think I'll sleep on my bed with my dog. My dog Lucky misses me so much! I don't think I'll be back to my normal workout at 6 weeks but the 6 week mark gives me confidence that everything should be healed. I'm o.k. around the house but once I step out and go to the store, I can't stand or walk very long-my body tenses up and I start sweating because I use so much energy so i guess we're healing on target. On the bright side: we can sleep on our side in a couple of days! Not that I would but in case I did roll over.
I don't have a PS or any other doctor except my internist or surgeon who did my masectomy 4 years ago. I hope nothing goes wrong because I didn't ask any of them before hand to help me if I need help with anything.
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I am finding that I am really having a lot of trouble sleeping at night. I fall asleep for two or three hours and then wake up. I often end up being up most of the night. Anywone else have this issue. What helps?
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Hi Besa - I feel your lack of sleep. I had surgery August 24th and everyday since then, I have had the same experience. Thought it was just me - sorry you are going through the same thing. When you are in the hospital and recuperating at home, it doesn't seem like a big deal. That time (when I'd wake up in the middle of the night for two hours at least) I would use it to look at this site or facebook or listen to my ipod to try to relax. However, once you start working (which I did this past week), it is very difficult to wake up for two hours and function normally at work because of tiredness. After three days of this happening this past week, I got up - checked my drains (yes still have hip drains after six weeks) - went back to bed even though I knew I could clearly stay up for two hours. One night it worked - the other it did not. So I figured I would try this every night this coming week and hopefully be able to go back to sleep 4 out of seven nights. If you are not yet working and/or have a couple of weeks before you have to get out of bed early, just relax and enjoy that time up without stressing and take naps during days if you can. If not, try going back to bed and see if you can hopefully fall back to sleep. Good luck and speedy healing and recovery wishes for you!!!
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I did stay. But I am still not feeling great. Having the most pain in my abs I have felt yet. Usually I am good in the am and then go downhill in the pm, feeling like I am going to vomit, taking zofran, laying down, then getting up because I have a pounding headache. I thought we would be out of here by now today but the thought of getting dressed and riding in a car seems so impossible. I don't know what is going to happen. I am in survival mode and doing what I can minute by minute. Taking so many meds, I can't keep track. Anti-nausea, pain, muscle relaxer, headache, anti-itch, antibiotic, stool softener, another pain med, then my regular meds. Still no bowel movement which must be not helping things. Took an extra suppository but nothing happened. Every day I lay here, I can't believe I actually did this. I am not still just planning for this but I am actually laying here with my breasts gone and my abs chewed up. Shocking even to myself. Have had a couple of crying jags out of the blue. Just random, I can't attribute them to anything in particular. Supposed to be leaving today so we'll see how it goes. Have a lovey saturday ladies.
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Anyone have a quick opinion...feeling weak and generally not well. Looks like red blood cell count is low. They are talking blood transfusion. Is this what I should do? Are there risks to taking blood? Kinda freaks me out a little but can't keep going like this.
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Joasta,
It is helpful to know it is not just me. I am not back to work yet so I will try to catch up on sleep in the day. If this continues I may talk to my internist and ask for some medication to help me sleep. If I took something once very 4 or 5 days I think that would do the job - one or two good nights sleep a week would be enough for me.
Kbodie,
I am so sorry you have to deal with all of this. You have gone through a lot and what you are dealing with now is big. Considering what you are going through I think crying is perfectly reasonable. Is there any explanation of what is going on - what is causing this and if they have an idea how long until the pain and nausia are under control. I wouldn't even consider going back to the hotel until you are really feeling good. This WILL get better. You will feel better - you just need to get through this difficult time.
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Kbodie,
I am not a doctor (so this is just my feeling about things) but you are dealing with some of the best physicians in the country. Unless you feel stongly that you are being pushed in the wrong direction I would trust them and go with their recommendation. I know toomuch (who has a clotting disorder) needed a transfusion when she was at the Center. It went well and I think after the transfusion she felt a lot better.
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KBodie, if you need blood you will be amazed at how much better you feel after the transfusion. It IS scary... But if you need it, you need it. You could ask if they'd check to see if your husband is, by chance, a compatible donor -- but my guess is that the process is too long to wait.
I think we have all experienced that "what have I done?" feeling when we look at our bodies, especially those of us who had prophylactic surgery. Losing your breasts, and even your tummy(!), is a BIG DEAL. It is truly something to mourn...But try to remember that an extreme amount of deliberation and consideration went into this choice, and that you made it for very sound reasons. Hold onto that thought!!! It stinks that we had to choose it at all, but it was a good choice! I think these waves of sadness keep washing over us. When you are in pain and physically depleted, it is the worst. It does get better as you get more comfortable and stronger. Tears come with the territory, I'm afraid...but again, there will be less and less of them over time. So much patience is needed; and it's hard to believe -- when you feel so miserable--- that it will ever look brighter. But it will! Sending you warm healing wishes today, KBodie .0 -
KBodie... I didn't feel well either, after a week, and was on a ton of meds, so asked them to take me off the Loritab... I was thinking I needed it, but I felt yucky... and voila, off pain meds and felt so much better... no more nausea, and no more yuck feeling...
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Hi all, i had stage one on wednesday. The service and the doctors were wonderful. My breasts look great and I am healing faster than expected. I really appreciate all the support I have been given especially from sonya and dana and rhonda! If people who havent had surgery want to ask me questions, please feel free.
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I do have one question though. Did anyone have severe nausea? Its been awful today.
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KBodie - I had a post op bleed and when Dr. S first recommended that I receive blood, I refused. I was just generally yucked out by the thought of having someone elses blood in my veins. I know there is nothing logiscal about that! The next day I felt so awful, I couldn't wait to get the blood. If that's what's making you feel down, you should have a remarkable improvement after the transfusion!
Semper - Great to hear that your doing so well! Nausea is often related to pain medications. You may want to see if transitioning to Tylenol and Ibruprofen takes care of it.
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Thanks toomuch. I think it is related. I feel horrible and then it wears off a little and I feel good and then it wears off more and I have to take another one. A weird cycle.
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Btw my stage 2 is supposed to be dec 14th.
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Semper, congrats on sailing thru-- tho that's probably an overstatement...it's never easy. Both the pain meds and the antibiotics can cause nausea. Either/ both can be changed. Or as a last resort, they can add in anti-nausea medicine, tho the Zofran can make you feel a little unglued emotionally, and we usually don't need any more of that! But, try to get something changed up... Hope you keep doing great.
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Hi KBodie. I got very anemic after the surgery and was given two units of blood and then two more the next day. I agree it is kind of creepy to have someone else's blood but if you need it, you need it My husband said I looked gray before I got the transfusions. I also had an abnormal EKG right after the surgery and scared everyone. I am (was) pretty fit with no risk factors for heart disease, so that was a big surprise that I have to get checked out with a cardiologist. The point of my story is that even though these are very good docs,surgery is a giant blow to your body and some of us will struggle more in the recovery. I would have bet on an uncomplicated recovery for myself but that isn't what happened.
I am sorry you are feeling so lousy. It sounds really hard. It is hard physically and of course the emotional part is huge. Just about anything will make me cry right now, whether it is something happy or sad. Please know that your sisters are thinking very much about you and that things will turn for the better. And if you need a good cry, by all means have one. I do regularly, as needed.0 -
Kbodie, FWIW, I had to have a few units of blood 6 years ago. I felt sooooooooooo much better afterward. So. much. better.
When ya'll take the pain meds, do you take it with a couple of crackers or toast? I found nibbleing on something...just little nibbles thruout my day really helped me with the pain pills.
feel better everyone
xx
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I am 8 days post stage 2 and still, also, bursting into tears many times a day -- at every little thing. Back to work on Monday and something miraculous better happen between now and then, or I will never make it through the day without crying. Yeesh
It's a little late, but for anyone who would be in Temple but is recovering at home -- I have been watching livevstreaming video of Yom Kippur services .. Coming from Central Synagogue in NYC. The final service is just starting. I watched last night and then sat outside with my laptop earlier today, and am now back on my bed watching. Have been texting with my 3 kids throughout which has made me miss them today a little less. I must say...I may never actually go to Synagogue again... This sure beats worrying about what to wear, standing too long in uncomfortable shoes, talking to people I'd rather avoid, or looking for parking! Haha. Love my bed !0 -
Semper I was going to say take the zofran for nausea as it stops it right away. But when someone mentioned it can set you off emotionally, I will admit that is when I have the crying urge. After nausea followed by zofran. Glad you are well semper, aside from the nausea. I checked out and we are still battling the homewood as they messed up our room. I didn't take the blood but did just wake after half hour with pulse pounding in my head, which was the sign of low blood count that led them to check in the first place.
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