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NOLA in September?

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Comments

  • Springtime
    Springtime Member Posts: 3,372
    edited July 2011

    Trisha, thank God exercise helps you! I am sorry about the cording. That is from Rads damage? The gift that keeps on giving, I swear. Good to hear from you! I hope you make it to NOLA!

  • cider8
    cider8 Member Posts: 472
    edited July 2011

    My cording has disappeared.  I could feel those little violin strings and the weird stretch/burn up to my thumb.  But of course I have a lot of post-mastectomy pain in combo with that.  Since I have not had swelling to get lymphedema diagnosis (thank God!) my focus is on the mx pain PT.  I do the self lymphatic drain massage when my arm feels weird (it helps).  So some of my exercises for mx pain are the same ones used to treat cording.  So I'm *thrilled* that got rid of the cording.  Of course, the cording can come and go.  

    I can't express how amazing my PT is.  She's very experienced w/treating post mx pain and is working to build a post cancer program within the pain center's practice. They just hired a nutritionist (who also works at the cancer support community center), will be starting a yoga program in Aug and is setting up a 'cancer gym' (I forgot what she's calling everything).  I talked about how I know what I'm supposed to do to drop my extra weight, but I struggle putting it into practice.  And with forced menopause w/chemo and tamoxifen later, it's going to be even more of a struggle.  This is exactly what she wants to program to address.  So, Tricia, I hope to follow in your footsteps and drop the weight I need to drop!  Oh, my PT is also always picking my brain about NOLA and I'm always glad to talk about it.  She's a great person to have some info about NOLA so she can share with others.

    Kathryn, I'm happy you are drain free!!

    Dawn, I'm amazed your insurance has already processed so much!  Mine is BCBS which pays so very little.  The only EOBs I've seen so far are for Dr S consult and Dr Stolier services.  And pathology.  Stolier and pathology were in network.  CRBS billing calls me when they see a check has been issued.  There is some check that was issued 3 weeks ago that I haven't received or seen EOB on.  I really hope I don't get any surprises.  I don't expect any, as Vicki went over things well with me.  I don't understand all the details but I'm not going to figure it out unless something necessitates it!  Oh, my prescription coverage insurance sent a letter wanting more proof of my husband's dependents.  I figured it was from all my cancer treatment but hubs said it was because audits are finding invalid dependents. I just keep feeling cynical about insurance and sort of brace myself when I get mail or phone calls.  The reality is that everything regarding insurance has been easy so far for me.

    I'm already feeling a sense of dread regarding the next surgery.  I know I'm not even in the same league as so many of you have had many many surgeries.  But I just hated anesthesia and narcotics and the pain!  There are certain smells that just bring about uncomfortable feelings;  I've even started waking up from things I smell in my dreams!  Hubs had to remind me that I just had surgery and next surgery will be in about 6 more months, giving me time to heal.  I think that post-surgery high has worn off and the mx pain and chemo pain/fatigue just makes me want to escape!  Such mixed and surprising feelings.   

  • bdavis
    bdavis Member Posts: 3,192
    edited July 2011

    I am starting to have some anxiety about the upcoming surgery....

  • kaitsmom
    kaitsmom Member Posts: 251
    edited July 2011

    Breathe, Betsy, and keep posting, and reading . . .  it will really help . . .  remember we will all be here for you - the night before, the day you are in your surgery, and all through your recovery, you will be in the thoughts and prayers of so many!!  Hugs through cyber-space . . .  xoxo

  • Springtime
    Springtime Member Posts: 3,372
    edited July 2011

    Betsy, it is like having a baby. you can't imagine it, it seems impossible, you have no idea how you'll do it, but yet everyone is doing it and everyone gets to the other side. You will too. I also had anxiety that sort of increased the closer I got to the surgery. When I was finally down there, I just so wanted it OVER and BEHIND me. The Looming nature of it was wearing me out!! Once you are on the other side, you just concentrate on getting better, day by day. 

    I remember being in the hospital area in a bed, all hooked up to IV, waiting for Dr D to be done with the surgery ahead of me, and it seemed to be taking forever (!!)  and I thought to myself, I should just get up and run away!!! (And this was stage 2!) I think some anxiety, fear, and trepidation is natural!

    Amy is right! We're here too! 

  • bdavis
    bdavis Member Posts: 3,192
    edited July 2011

    Thanks Amy and Beverly.... I know... really, but then there is the non-reasonable side of my brain.... I have even said to my mom and others that I am sure I will say, "I have made a terrible mistake" and such afterward at some point... I said to them to remind me that I am NOW totally aware that this will be a tough road and painful, but short-lived... I need to be reminded of what I think now later...I have asked them to tell me over and over that I am aware of the risks and that after all my research have chosen this for a multitude of reasons and that I have to trust that.

    Of course, in all the planning and research it was "later." Well... later is now here and that is daunting.

  • SAMayoFL
    SAMayoFL Member Posts: 63
    edited July 2011

    Hey Betsy, I have to tell you that I am right there with you.  I am seriously TERRIFIED.  I am keeping myself really, really busy and I know that it is a tactic to keep me from having too much time to think.  When I really sit and think I have an absolute panic attack.  When I look at pictures of DIEP patients, I really freak out!  I will be thinking about you and praying for you along with your NOLA sisters.  I know we are going to be fine in the end!

    Susan

  • bdavis
    bdavis Member Posts: 3,192
    edited July 2011

    Susan... I know everyone must freak out... I can't imagine anyone just taking it in stride... I have so far faired well... recovered from my lumpectomy and SNB very well... but this is soooo much bigger... Double MX, and stacked DIEP... and if it had been mandatory, I think I would be freaking out, but I am voluntarily doing this which makes it much worse emotionally.

  • Jerusha
    Jerusha Member Posts: 339
    edited July 2011

    Bdavis and SAMayoFL - There was NEVER a time when I said " I have made a terrible mistake". Right now is the hardest time! It won't ever be this bad again. It is nowhere near as bad as you are imagining. I think the lessening of the anxiety and terror occurs in waves. First wave : walking out your front door. (Phew. I'm really doing this). Second wave: getting on the plane. (Can't fret anymore about what to bring or how to organize your family) . Third wave: your pre-op day at the CRBS. (Wow. Soooo reassuring. I am in good hands). Morning of surgery: (No turning back. Calm and ready. Eyes on the prize). At a certain point I think that the anxiety just dissipates and is gone. Know that you will be completely taken care of after surgery. Your pain will be adequately managed and you will be comfortable. YOU CAN TOTALLY DO THIS!!!!!

  • cider8
    cider8 Member Posts: 472
    edited July 2011

    I can also say I've never thought I made a terrible mistake.  There are parts that are tough for me and thankfully you don't have to have your recovery flow right into chemo.  I did not have a lot of time to think about the surgery, but I fit in the fretting!  Mixed in with the anxiety about surgery were the emotions about the cancer.  I still get frustrated recovering from surgery--that I actually had plastic surgery, but sometimes I still find it unbelievable that I needed both breasts removed.  These two feelings collide---no matter what, the cancer was there and I could not change that the breast tissue had to be removed.  So what I could control, so to speak, was what I did after that tissue was gone.  I did all that research, weighed all my options and chose that I wanted breasts and I did not want implants.  To further build on that, I feel so empowered that I found the best Drs to fulfill the choice that I had made.  So I remind myself of those awesome things, the choices I made, and accept that cancer is ..... rough no matter what.  

    Throughout this whole cancer journey so far, everyone has told me the anticipation (the anxiety, worry, fear, projection) is far worse than the reality.  And it truly has been, for every single thing.  I just read somewhere that our brains can perceive actual events and imagined events the same way.  It's visualization, like athletes visualizing a race or making a vision board.  So try to imagine the surgery in faith and love rather than fear and worry.  You've been to the Center and met the Docs.  You've got a jump start on how wonderful it is!  Think about how you got through everything else so far and know you can do this!  There really are so many ways I was taken care of wonderfully, so much so that I look back fondly on them.  

    I really need to listen to myself here!  I just had a wave of anxiety about going back for stage 2.  I mean, it's natural, I'd say.  Betsy and Susan, you will both do so well.  You'll have to be gentle on yourself to allow your body to heal after surgery.  You can do this!!  Your sisters here are proof! 

  • SandyinSoCal
    SandyinSoCal Member Posts: 559
    edited July 2011

    Trishia, I am so sorry that you are dealing with issues with your health!!   My son wants further testing because he is afraid that he may have something else going on inside his body.  I can't blame him for feeling that way, and we will probably get another opinion.  I grew up within 4-5 blocks of what are now two EPA superfund toxic dump sites, and my cousins were raised a block closer to them than we were.  One was a plant that manufactured DDT, and the other was a synthetic rubber manufacturing plant which dumped waste into unlined pits from 1947 on.  In 1984, the year my mother died, contamination was discovered in the groundwater, but they claim that the source of the drinking water in the area is deeper and not contaminated. To add insult to injury, we lived only a block away from a major freeway.  My uncle died a couple of years ago from brain cancer, and my aunt had colon cancer at age 50.  My dad died from pancreatic at 53. My mom died from breast cancer at 48; she also had uterine cancer.  One cousin had breast cancer at 45, and mine was at 47.  My other cousin, and my brother and sister have not been diagnosed with cancer, at least not yet. Brian and I bought our first home next door to my parents, and we moved away in 1992, three weeks before David was born. I have to wonder if all of the cancers have been due to something we were exposed to, but then, my dad's parents died of cancer (bladder and breast) as well and they lived at least 5-6 miles away.

    Susan and Betsy, I had to wait several weeks for my first surgery in NOLA, with a complication that was increasingly uncomfortable after my stage I in Los Angeles.  I remember that I felt a peace come over me once I got off the plane in NOLA and had my pre-op appointment, and I've since talked to many women who've described the same.  When Dr. D was marking me with the blue marker, I remember thinking, "wow, I am finally here and he really is going to help me" and then I felt very light-headed because it all just seemed so unreal.  My first surgeon refused to address the situation, and I did a lot of research to find the best doctor.  While I waited to go to NOLA the first time, I read a zillion testimonials about Dr. D and Dr. S, written by women who went to them originally, and by those who, like me, had gone there for help with complications. There weren't any NOLA patients on this forum at that time, but the FORCE board was full of women singing their praises.  I was lucky enough to meet one of them prior to my trip, and see her result in person.  I also spoke on the phone with a couple of other ladies Dr. D had helped, which gave me a lot of reassurance that I was making the very best decision for myself.  I think that it is such a privilege to have surgery with these doctors---so many thousands of women are not so blessed.  I am so thankful that I was able to go to NOLA after having so much trouble with my surgeon here at home.  My approach for dealing with the waiting was like Susan's---I was so busy that I didn't take the time to think much.   Knowing in my heart that I'd found the right doctor was a great comfort to me, and whenever I felt anxious, I would read the posts by women on FORCE. Meeting one of Dr. D's patients in person was really helpful too, especially because she was a couple of years out and her scars were completely faded.  That's something you don't see in the surgery photos online, and the fresh incisions are a daunting sight, but they do fade out and there comes a time when you look in the mirror and you will be proud of yourself for being proactive and choosing the best doctors on the planet.  Jerusha is right--whatever pain you may have is managed well, although this surgery is not painful like you might imagine.  It's all superficial--just skin and fat, not invading any bodily cavity.   Knowing that helped me so much when I was preparing for my stage I.  

    Betsy, you may never feel that you've made a mistake.  I think that most of us felt tremendous relief once we had our mastectomies and got rid of our breast tissue that had already proven it could and would grow cancerous. 

  • SandyinSoCal
    SandyinSoCal Member Posts: 559
    edited July 2011

    Kathryn, in NYC on July 20th, we are doing  a big PR event to showcase the breast cancer apparel we make. We will be talking about Breastoration, and how my company is using our apparel to help raise funds to help women going to NOLA for reconstruction.  The event is at the Sofitel, so if you happen to be nearby, come and see us.  The show is called "Pink Gear" and everyone from ABC News to "O" Magazine, Redbook and InStyle are supposed to attend.    It would be fun to see you if you have time.  The show is from 2-7 p.m.  You have my cell---call me if it works for you!

  • bdavis
    bdavis Member Posts: 3,192
    edited July 2011

    Thank you ladies... It does help to hear your kind and reassuring words... For me, I have no doubt that for this surgery, these docs are the best... I am going thru a phase of wondering if I've made the right choice to have a MX instead of rads or whether I should have stayed closer to home... Of course, I have been over this and over this for months, and in the end chose NOLA for a reason... As I tell my mom, doing nothing was not an option and all things come with risk... and I am trying to make a decision that will give me the best results down the road and not get caught up in the short term worry.

  • kaitsmom
    kaitsmom Member Posts: 251
    edited July 2011

    Betsy, just another quick note here - I could have chosen to go close to home.  I have Duke and UNC within 40 minutes drive.  Sounds promising, right?  They both told me that their conversion rate from a DIEP to free-tram was about 15-20 %.  And that I would have to sign the consent form ahead of time to allow for this if it occured. To me that sounded unacceptably high. (Oh and a failure rate of about 4- 5%)   After my surgery, when I spoke with Dr D and with the nurses, I was told something interesting.  And reading my operative report backed this up . . . This is my understanding . . .  My perforators were not in there all nice and neat in a line - they were criss-crossed and what I guess in laymans terms would be called,  'a mess'. This is where another doctor would have converted the surgery, especially since working under those conditions added to surgical time.  Dr D and Dr T kept at it . . .   they sorted them all out and did whatever it is they magically do and here I am!  The nurses say that they don't give up - they take the time to make it work for their patients.  I have not had an easy recovery,but  that is a whole other story. But am I glad I went to NOLA and not elsewhere for this, where I would have ended up with a free tram or a Tram?  You bet your boobies I am.  Staying close to home is not always the best choice.  I think you are going to be just fine.  And by the way, I admire your courage and your diligence in your research as well.  

  • bdavis
    bdavis Member Posts: 3,192
    edited July 2011

    Thanks Amy... I know you have had a hard time, and I'd like to think your complications are more of an anomaly ... And you make an excellent point about conversion rates... I definitely thought of the success rate when choosing NOLA plus another biggie for me was the post surgery care, and their striving for excellence. After meeting with Dr Allen in NYC he was saying one surgery and then weight loss to tend to the transition to other fat... I like that Dr D wants a finished product... Of course, I hope we can fit it all in this calendar year as I don't want to pay my coinsurance of $3600 again... that was a recent realization, so of course I am pondering.

  • christine47
    christine47 Member Posts: 846
    edited July 2011

    I believe I saw someone on this thread mention a tatoo artist in Asheville, NC?? 

  • kathrynla
    kathrynla Member Posts: 406
    edited July 2011

    Betsy and SAMayoFl, I think it's all been said by everyone else, but your feelings are natural and almost all of us have had them. I scheduled my surgery 9 days after meeting the doctors so my nervousness and anxiety went into hyperdrive...plus I was going to be "losing" my breasts - but as everyone said, the skill of the whole team there will ease your tensions.  The post surgery for me was not nearly as bad as I imagined it. And the same with Stage 2 (once I got my blood count back up.)  We are all here for both of you so don't hesitate to vent your fears.

  • bdavis
    bdavis Member Posts: 3,192
    edited July 2011

    Thanks... and I am indeed venting... with more to come I am sure.

  • cider8
    cider8 Member Posts: 472
    edited July 2011

    Amy, you read your operative report?  Did you ask for that?  And then they sent it?  This hadn't occurred to me.  I would love to read mine!!

  • bdavis
    bdavis Member Posts: 3,192
    edited July 2011

    I have my lumpectomy operative report... I like having the reports... I found out I have a pappilomma from reading. not because of the doctor... So I think its important... I then discussed it with Dr Stolier who said the pappilloma should come out, one more component that helped me make my decision for a MX

  • SAMayoFL
    SAMayoFL Member Posts: 63
    edited July 2011

    You ladies really are a wonderful, supportive group.  When JustLaura's date was coming up she said something that really made me think.  She was talking about the differences in all of us depending on where in our journey we are and I had never really thought about it before.  Betsy, you are about to lose your breasts which is, indeed, a very big decision.  I, on the other hand, have already lost one breast and did not have any reconstruction.  I am going to get my breast back.  The thought of having two breasts again and cleavage makes me want to run up and down my street, shouting and yelling for joy.  Since I am BRCA+ doing nothing is not an option for me either. 

    Cider, your journey is the exact opposite of mine.  I had chemo first.  I am right at three months post AC + T and I am still working on getting my strength and stamina back.  Somedays I don't feel strong enough to face major surgery but I know in the end I will be fine.

    Thanks to all of you with encouraging words!

    Susan

  • Springtime
    Springtime Member Posts: 3,372
    edited July 2011

    Christine, I have heard there is a tattoo artist in Asheville NC, a woman, and she does cancer patients for free...  I don't know her name, but google it! Report back if you find it! 

    Betsy, I also never had a regret. And, I had my stage 1 in September and my stage 2 in December of the same year. I scheduled both at the same time. You can call now and schedule your Stage 2 to make sure you git it in this calendar year - I would actually suggest that - The end of the year gets very busy with lots of ladies trying to get their surgeries in before end of Dec. Best to get it on the books early. They will likely suggest you wait 12 weeks given your're doing stacked (that's what they suggested for me.)

  • kaitsmom
    kaitsmom Member Posts: 251
    edited July 2011

    Paula, I keep copies of all my results and reports.  I like reading them as well. Even when I do have to google the occasional medical term!  Betsy, you are right, my complications are definitely an anomaly.  With me, I have come to expect the unexpected. I am always an unusual patient.

     The woman in Asheville who does tattoos is called Earlene. She is at the Asheville Permanent Makeup Clinic.  Her name on here is MakeupchickNC. 

  • Ashvegas
    Ashvegas Member Posts: 1
    edited July 2011

    Her name is Earlene Bennett.  She also has a 501c3 called Beauty through Cancer.  I have known her for years.  Just diagnosed myself and getting ready for lumpectomy on Thursday.  I haven't told many people, not even Earlene.  I know she does a great job.  

  • Minnesota
    Minnesota Member Posts: 604
    edited July 2011

    Kaitsmom, Sandy, Cider, Jerusha, Amy, Beverly, Kathryn, and whoever else I probably missed -you all did tremendous jobs of of helping soothe the fears of those coming up. It's moving how heart-felt your words are. I love this thread! Women helping women in ways no one else could. We've all been thru this. In different variations, that's true. And we're at different stages in the process. But all together, we represent a huge pool of knowledge and understanding and empathy. It's so powerful and beautiful!

    I just want to add that I have had no regrets either. My first recon was delayed, so it was getting my breast back - like Susan. Oh, what joy that was to wake up and see my breast again! Indescribable, unless you've been without... But the second was a couple years later - elective mast and recon. And Betsy - no regrets. You know you have done everything humanly possible to save your life. Your life is more precious than your breasts, and you are irreplaceable to those who love you. So you will have done it not only for yourself, but for all of them, too. I know you know this, but sometimes it helps -- when you're feeling afraid -- to remind yourself of that. There's peace in knowing, with certainty, that you've used the biggest guns possible against this evil, tenacious disease.

  • bdavis
    bdavis Member Posts: 3,192
    edited July 2011

    Again, thank you all for your reassuring and supportive words... It is indeed consoling to be on this site and have you all there as a cheering squad... hard to believe that in a month (less), I will join your side and mentor those behind me... seems surreal to be honest.

    Today I am off to the beach for the day and night with a friend... one last blast for summer of 2011 to swim in the ocean... Then Saturday I am headed to northern Vermont for a week of excellent food (just to help the doctors harvest of course) and golf daily, with my ENTIRE family (cousins included)... so I am keeping myself busy and fulfilling my summer activities while I can, so afterward my job will be to rest and recuperate, and be free of any and all disease... and watch my hair grow... 

  • louis13
    louis13 Member Posts: 195
    edited July 2011

    sounds like a plan betsy...and i am away too until mid july with my constant and his two young boys.. apparently boys discussing will I have checked luggage( the three of them never do) ..and it is like DUHHHHHH ..wigs take up a lot of room you know

  • kaitsmom
    kaitsmom Member Posts: 251
    edited July 2011

    I remember trying to figure out traveling with wigs, scarves, etc, and it was so overwhelming to me.  Then again, I did not handle my chemo well AT ALL!  We were only going to the beach, and in the end, I had to have my husband pack my bag and put me in the car. (This was 4 years ago and the darkest time of my life.  But I don't mind sharing that with y'all because I want all the ladies on here to realize how far ahead of the game you are than where you could be. All of you really are true and brave warriors.)  Betsy, what beach are you heading to? And Vermont at the end of the week sounds wonderful.  I love Vermont, and I, for one, am sick of the heat this year.  It started in Raleigh much earlier and much hotter than usual.    And louis13, where are you off to?  I am at the beach now, and headed up north on Friday to NJ and NY to see friends, family and attend a high school reunion!  I am hoping to meet Vinnie near Baltimore to check out the tattoo situation on our way up!  Anyway, fingers crossed for cooler temps when I get up north.  (Of course you know I will be grousing all winter when I am frrrreeezzzing) 

  • cider8
    cider8 Member Posts: 472
    edited July 2011

    Today I am 8 weeks out from my DIEP!  I saw an EOB that says Trahan was my 2nd surgeon.  Ins didn't show payment, saying it was a duplicate claim (I haven't seen any other claim yet).  I haven't seen any other EOB for Sullivan or SCSH.  I am curious!  I hear BCBS pays so terribly low.

    Wellllll, I got to meet one of our own today!  I was at PT this afternoon.  My PT and one other PT know my NOLA story (and both have seen the work!), very curious and love that found NOLA.  The other PT popped her head in and said her patient who just left knows me and went to NOLA.  I said WHO??  It was our sarabhealed, who after talking to gave me the confidence to start the NOLA paperwork.  I told the PT, well, you can't catch her now (Sara had already left).  Her eye twinkled with the challenge and ran out to catch Sara and brought her back in.  So I got to visit with Sara for the first time in person while I was worked on!  We had a little show and tell (with my PT there!) and got to talk a bit.  It was a wonderful and unexpected surprise.  My PT (who I found out today is the practice's Director), the other PT and the pain Dr all want to go visit our wonderful NOLA.  I told her I'd take the road trip with them.  :)  I'm happy to spread the word.   

    I've been feeling good today--just in time for chemo tomorrow!  Ah well, time is flying.  Betsy, I've been to Vermont once on a college roadtrip and I LOVED it.  I've been to New England a few times and I just love the whole area.   I am envious of all the trips!  

    Susan you are 3 months post chemo now?  And still feeling not recovered?  Ugh.  Well, you've got another month to build up strength.  It looks like if chemo continues as scheduled I will have Stage 2 mid Dec, right at 3 months post chemo.  DD AC/T is brutal!  I'm hoping PT throughout chemo and a PT guided exercise program post chemo will help build me up before surgery.  Today is the first day since last infusion I feel GOOD.  I guess they've got the timing right since I'm strong enough for tomorrow's  dose.  Keep us updated on how you are feeling leading up to surgery and post surgery.  

    I had a nice July 4; we had a few families over, ate, shot fireworks and just visited while all the kids played.  It was easy and relaxed but still had a lot of fun. 

    I love you, my NOLA sisters! 

  • kathrynla
    kathrynla Member Posts: 406
    edited July 2011

    shoot - my tummy is bulging out since I pulled my drains on Friday and I have to go in for an ultrasound and possible aspiration (no longer an ass!piration!)  It feels hard and bloated.  Can't catch a break with my post-surgery these days, can I?

    BTW, I have my surgical reports from Stage 1 and 2  - just ask and you shall receive! Fascinating...although Stage 2 requires a medical dictionary.

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