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NOLA in September?

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Comments

  • Nordy
    Nordy Member Posts: 1,106
    edited March 2011

    Trishia. Cry I am sorry. Are you coming back here for surgery? Did this happen because of the tendency your body has to keloid? I am so, so sorry. You are allowed to have a pity party. Really. You are allowed. I want to give you a big huge hug - even though I know you are tough... one can only take so much. Thinking of you...

    Kathryn - I am 99.9 percent certain that Dr. G is NOT the doctor that did Sandy's surgery. Dr. G did some training with Dr. Allen in NOLA and he also does some lymphedema surgeries. I am trying to get down to see him for a consult regarding anastamosis of lymph vessels... even though I know I am on another planet to think that my insurance would even remotely consider it. I can't for the life of me remember who Sandy's doc was, but pretty sure it wasn't him!

  • kathrynla
    kathrynla Member Posts: 406
    edited March 2011

    Thanks Nordy!  My friend is still in the looking stages (since she just finished radiation last week). I, of course, am partial to NOLA!

    If you do come down to LA I'd love to see you.  Maybe it would be an inspiration for an LA NOLA party.

    Kathryn

  • Nordy
    Nordy Member Posts: 1,106
    edited March 2011

    oooooo...an LA NOLA party! That would be FUN!!! I am partial to NOLA also... teehee... but Dr. S doesn't do the anastomosis procedure... and I am not willing to do VLNT yet...

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

    Ladies, on vacaton next week. HORAY. I have been more tired than ususal. I hope I can just sleep this out of me!!!

    Trisha. Good grief. You know all the heart pounding exercise you are doing increases blood flow and hence tendency for LE. Are you wearing a nice tight sleeve or compression in those areas? It's supposed to help. There is also some new info out on the LE threads about this new "wave" material that Nordy has tried and I ordered!  You hang in there and YES you are allowed to have a pitty party. It just never ends and it must get really friggin OLD about now!!!

    Still no word from LCISCarroll!! We hope you are doing okay!  

  • melindastn
    melindastn Member Posts: 98
    edited March 2011

    Sringtime,  Hope you get much deserved rest on vacation. 

    Had a good laugh at lunch yesterday.  I ordered a Crawfish Salad and told my lunch partner that I had to have the craw fish since I am now part Cajun.  I could not stop laughing because I really do feel like a part of me was born in NOLA. 

  • Trishia
    Trishia Member Posts: 361
    edited March 2011

    Yep Spring, I wear compression and do MLD after exercise.  I have fibrosis/radation damage that makes my left shoulder/arm/shoulderblade throb and ache and be numb and tingly.  :( 

    Nordy, I'm staying here.  I think I will need several silver nitrate treatements afterwards to make it heal correclty.  I will call Dr. Rushing and give him a heads up though. 

  • kcshreve
    kcshreve Member Posts: 349
    edited March 2011

    As a fellow LE person, I will simply comment that when my arm/trunk is "worse", it impacts my emotional levels.  I cannot explain this, but others have agreed with me.  Be gentle on yourself. 

  • Jerusha
    Jerusha Member Posts: 339
    edited March 2011

    Hi Nordy, I am really interested in learning more about the anastomosis procedure. Could you tell me about it +/or refer me to some other sources? Thanks. I did not know that there were any surgical approaches other than the VLNT.

  • rogam
    rogam Member Posts: 123
    edited March 2011
    My mom lives 45 mins away from NOLA wondering if it is necessary to stay in the city after the surgery? For the DIEP ladies do I need to purchase a recliner? 
  • Jaimieh
    Jaimieh Member Posts: 925
    edited March 2011

    Kathryn~ I would hobble down the steps after surgery (my DH and I watch TV on different floors sometimes) pull my shirt up and make him look because something was wrong or I was happy about something.  YEP, I would demand for him to look at my boobs.  Sometimes if he was upstairs I would go into the kitchen and make him look because the windows do not face anything.  I made him look at hairs, stitches, scars and just about any new obsession I could find.  I think he is missing them so maybe I might have to start on him again....lol....

  • kathrynla
    kathrynla Member Posts: 406
    edited March 2011

    Rogam - how lucky are you! That's more than close enough. You really only go in 1 week post surgery once you leave the hospital. Also, do you have a date yet?

    Springtime - enjoy that vacation!  Is it a staycation or are you going away?

    Jaimieh - too funny (and I can completely relate to you!)

    Was actually a little bummed when I spoke to Celeste yesterday and she said that they may have to move my nipples up if they are too low. Seems like a small thing but I had nipple sparing and no scars on the front of my breasts (just on the bottom.)  Oh well, I guess it's a small thing...and she did say they'd need to see it before they made a decision -- although not sure what else they can do.)

    Off to the local farmers market where they are promoting over 500 varieties of tomatoes today! Who knew?! Tomatomania!

  • heatherbless
    heatherbless Member Posts: 55
    edited March 2011

    Hope everyone is doing well.  I am set for NOLA:  I have my flights, place to stay, etc.  had a great phone consult with Dr. Sullivan.  I am hoping after this revision that I will be well on my way to being done.  But if I have to return to NOLA--I will with no regrets.

    I ALSO WANT TO SHARE WITH YOU ALL--IF YOU DONT KNOW:  MY IDENTICAL TWIN SISTER, KATHY, DIED A YEAR AGO, MAY 12TH COMING UP.  IT HAS BEEN VERY HARD FOR ME.  SHE WAS 43 AND WAS DIAGNOSED WITH SOME RARE TYPE OF CANCER CALLED CHOLANGIOCARCINOMA.  SHE BEGAN TO GET SICK WHEN I BECAME WELL.  I QUESTIONED GOD FOR THE LONGEST TIME WONDERING WHY:  WOULD HE LET ME SURVIVE AND THEN TAKE HER, MY ONLY FAMILY LEFT AND LEAVE HER TWO SMALL CHILDREN BEHIND.  I MISS HER SOOOO MUCH AND KNOW THAT THIS TIME IS VERY DIFFICULT.  I AM TRYING TO MOVE AND DEAL WITH THE GRIEF--I HAVE PLANS TO GO TO A THERAPIST AND SEE IF THAT WILL HELP ME.

    AS SURVIVORS;  I RECENTLY READ AN ARTICLE ABOUT WHAT THEY CALL SURVIVOR'S GUILT AND YES I FEEL GUILTY FOR SURVIVING.  I KNOW IT WILL GET BETTER IN TIME.  THANKS FOR HEARING ME.  LOVE, HEATHER

  • Nordy
    Nordy Member Posts: 1,106
    edited March 2011

    Heather - first of all: ((((((hugs)))))  Second of all - I know survivor's guilt all too well... I have had it a couple times with a close friend that left her little baby when she was taken by lung cancer (never smoked - 26 years old) and another aquiantance that passed from BC with 3 small children. I don't think we will ever know the answers to why we are still here and others are not. You can question it and ponder it... but I don't think we will ever know... at least not in this life. Lance Armstrong wrote about it in his book "It's not about the Bike" when he lost a close friend to lung cancer as well. I think the thing that I took from that is that the people that have passed on would not want you to feel guilty or in any way less worthy (which is how I sometimes feel) of still being alive. In this case, I think your sister would want you to be happy and healthy... because isn't that what we all want for our families? Hang in there... I keep thinking, there must be something left for me to accomplish... so maybe I better accomplish it really slowly so that I can be here for a long, long time... Wink

  • AnneW
    AnneW Member Posts: 612
    edited March 2011

    Thinking of you, Heather!

  • Trishia
    Trishia Member Posts: 361
    edited March 2011

    ((((HEATHER)))))  I know it's easier said than done, but you can't beat yourself up.  I know many mothers who feel guilty for passing their genetics to their kids.  Even though I passed LFS on to my son, I don't feel guitly.  Because there is NOTHING I could have done to prevent it. I read about other LFS patients who are dealing with mutliple cancers over and over again.  I have LFS 'lite' comparatively.  I don't know why. 

    It is the same thing with you.  There is nothing that YOU did to cause your sister's death.  Who knows why some people's body will aid in the fight against cancer and some people's don't.  It's what makes cancer such an ugly bastard.  But Nordy is spot on...your sister wouldn't want you to feel guilty.  She would want you to live your best and fullest life with joy and love and to not stay in a place of guilt.  

    I wish I could give you an in person hug.  My sister is my best friend too.  The anniversary of her passing is going to fuel those emotions.  We are here for you!!  

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

    Hi Rogam. Are you scheduled yet? I don't have you in our list ing above! Let me know if you would like to be added. :)

    After stage 1, you will be in the hospital 3-4 days, then I think you could go to your Mom's until your post surgical appointment. That would be like day 10 or so after surgery. Then you can go home the next day. I don't think you need to be in the city to recover - 45 minutes is close enough that if you needed to go back, you could drive there - but typically nothing goes wrong. We hope this for you!

    I personally did not have a recliner - but I did get a "back max wedge" (you can google it) to help after stage 1 in the hotel, etc. When I purchased it I had it shipped to the center. (They are great about things like this - Katy in particular). We still use it on the couch, so it wasn't a wasted purchase. I think if you already HAD a recliner, it would be wonderful. I'll let other ladies comment! 

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

    Oh Heather, I just read your post. :(  Be kind to yourself. We certainly don't get to pick these things that happen to us or our loved ones. We are just left to make sense of it, or not!! Hang in there. I am glad you got your dates and everything is set up! You have really been through the ringer, body and spirit. Focus on healing things, whatever they are for you!  I don't know if this is true, but people sometimes say these things get somewhat better in time. It has not been that long for you, less than a year even. xoxoxoxoxoxoxo

    Trisha, about the LE, have you considered one of these new silver "wave" weave garments?? I am willing to try anything!! Mine is in the mail to me now!! The other day I was complaning about LE and how I can't believe 3 healthy nodes were removed from me, and then I was blasted with radiation in my armpit - I still do NOT get this!! But he said to me, Bev, you feel bad about LE, but I look at you and am glad you are here. So, that put things in perspective. I guess no matter what we've gone through, or what we go through, we are still here. Friggin cancer! ugh.

  • CandDsMom
    CandDsMom Member Posts: 68
    edited March 2011

    (((Heather))) thinking of you. I am sorry we won't be able to meet in person in NOLA. You have been in my thoughts over these last few weeks - I know in my heart Dr S will be able to help you out.  Take care of you.

  • rogam
    rogam Member Posts: 123
    edited March 2011

    Heather and Trishia you guys are in my prayers.

     Springtime thanks for the info. I am scheduled for May 25th with Dr. D. I will look up the wedge thingy right now. I am so thankful for this board! 

  • SandyinSoCal
    SandyinSoCal Member Posts: 559
    edited March 2011

    Hi Kathryn, sorry for not responding sooner.  I'm in Dallas and have been having a difficult time getting online for the past two days.  Dr. Granzow assisted during my first surgery---I think he was there for about 2 hours out of the 14 that I was under.  He is well aware of what I went through with Dr. Boyd, and told me that he felt really bad about it and had left that group not long after my surgery.  Dr. Granzow has volunteered to do pro-bono flap reconstructions for women in our area who have no insurance.  Alisa (founded My Hope Chest) and I met with him and spent a couple of hours talking to him.  My impression of him is that he is really a great guy.  I have met one of his patients and she is very happy with her reconstruction, and also with the surgery he did to relieve the lymphedema in her arm, which had partially disabled her.  He trained with the NOLA docs for a few months, and has also done training in other countries too. He is going to be doing some reparative surgery for a friend of mine really soon. That's really the extent of what I know of him.  I do like him, and I think he is very compassionate.   After what I went through, I now always advise that anyone choosing a surgeon needs to see results photos and hopefully a patient or two in person, to judge their results.

    CandDsmom,  I'm not going to make it out to your neck of the woods until this fall--the last week of September.  Hopefully we can meet then!

    I received very good news from Alaina yesterday.  The chemo is working and reducing the size of her mets.  She is hoping for a break from chemo, possibly after another three months.  Please continue to keep her in your prayers!  She has done remarkably well despite the chemo, which she believes is one answer to the prayers being offered up on her behalf. 

    (((((Heather))))))))  I'm sorry for your grief and I hope that the counseling helps you.  Time seems to be a great healer in these situations and helping others in your sister's honor will give you great comfort when you are ready for that.

     Has anyone heard from lciscarroll yet?

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

    I am trying to schedule my date in NOLA and was offered a date with Dr D and Dr T... I asked when Drs D and S were both there... anyone have their surgery with Drs D and T, and not S?

  • Nordy
    Nordy Member Posts: 1,106
    edited March 2011

    bd - I had my surgery with Dr. S and Dr. T, Dr. D was helping Dr. Massey that day. I don't think you will go wrong either way, but if you really want Dr. D and Dr. S, let them know and I am sure they will find you a day.

  • heatherbless
    heatherbless Member Posts: 55
    edited March 2011

    Thanks to all of you for your awesome suport and responses.

    My surgery is on for April 29th:  has anyone had problems with being anemic?  According to my latest bloodwork, I am anemic and it has probably been ongoing since my last stage 2 surgery in december.  I think the my hemoglobin is like 11.3 when it should be 12?   Any thoughts on that--I just started taking iron about two weeks ago--and hope that helps.  Thanks for your feedback.  Love, heather

  • macksix6
    macksix6 Member Posts: 125
    edited March 2011

    Hey ladies it's been a long time, I'm bad. After visiting my daughter in Houston I snuck over to NOLA for a quick revision with Dr. D. Sorry Sandy, I now have the best nipples. HA HA.

    I must have just missed LCIS, my surgery was on the 25th. I did meet a couple of great gals that were in for stage 1 and I got to see my favorite nurse Erin, she is such a doll.

    Heather and Trisha hugs to both of you. Heather I had both low red and white counts for this last surgery. My levels just have not returned to what they were before my stage 1. As long as you are just a bit below you will be fine, and yes keep taking those vitamins.

    Sheri I hope you are feeling better and back on that bike. I hope to be back playing tennis in 2 weeks.

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

    Rogam, I added your surgery. I thought you were Stage 1, but if that is not right, let me know and I will update it. 

    Sandy, I am so glad to hear good news about Alaina! I think of her often. Will continue to lift her up!

    BDavis, I had Dr. D and Dr. S for mine, but I had a 4 flapper (front and back) and I believe because of the complexity I had the both of them. I think that it is often the case that Dr. T helps Dr. D & Dr. S. My impression it's a well oiled machine and you'll be fine. What did they say when you asked for Dr. D and Dr. S??

    Heather, I have both low red and white counts from chemo, and this ended over 2 years ago. I was told by my ONC that in 20% of the cases she sees where a woman had both chemo and RADS, this happens. It is supposed to resolve about 2 years out. I am over that and still not sure I am resolved yet. My counts are always a bit under "normal". ugh. I can't take iron to raise the red count or hemoglobin or whatever it is because I get terrible constipation! But have you tried this? 

    NIPPLE CONTENST!!! Sandy vs. Stephanie!!!! LOL!!! Good to hear from you Steph (If I remember correctly, MACKsix6 = Stephanie, right??)   

  • Nordy
    Nordy Member Posts: 1,106
    edited March 2011

    Thanks Stephanie! I am so excited that you got to have another surgery... and slightly jealous as well... :)

    Heather - eat lots of greens... and I think wheatgrass is also supposed to help with counts. It took a while for my rbc's and wbc's to come up after chemo and rads... but I am nearly 6 years out and my platelet volumes continue to be low. I researched and there is a thing called acquired storage pool disease that you can get from high doses of chemo. Surprisingly, I don't believe anyone ever talked to me about this... although I was in such a fog at the time of diagnoses, that who knows what I remember! Anyway, storage pool disease is a mild bleeding disorder that causes bruising. I think I may have even had this before chemo - as it seems I have always bruised easily, however, it has been only SINCE chemo that I have had low platelet volumes. (I have normal platelet counts, but low volumes - two different things). Anyway, the first few times I had blood work done and asked the MDs about it - they all were very nonchalant and just said that sometimes that is what chemo will do. Anyway... Heather - just know that some of these things happen, but considering all you went through with your stage 2, I am not suprised thta you are anemic. You can always BlenTec your spinach with some fruit and get plenty of greens that way!

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

    Springtime... They offered the date that I asked for with Dr D and Dr T, but when I emailed with a different date asking about Drs D and S, I haven't heard back... I was in St John at the time and couldn't call, so now that I am back, I will probably call tomorrow and ask on the phone... I am looking for dates at the end of July, so it should be fairly wide open, but I am dealing with some vacation issues.... and I may be one of those complicated surgeries... I have been told by a local PS that I do not have enough abdominal fat... maybe enough for one small breasts but not two moderate breasts... I have more hip (love handle) fat, so I am inclined to go to NOLA for a consult so they can decide first hand... And I am also somewhat open to a small implant at stage II if need be... I don't want just an implant as I feel it would look good and would be heavy... I think a flap with small implant would resemble an augmented breast... next best thing to all flaps IMO.

  • AnneW
    AnneW Member Posts: 612
    edited March 2011

    bdavis, I had two local PSs say I didn't have enough belly OR butt for a bilateral, but they didn't do the surgeries, so they weren't reputable on that. I had plenty of butt, by the way.

    Get your consult. They can stack flaps if need be. Impalnts (IMHO) are nothing but trouble waiting to happen!!

  • kathrynla
    kathrynla Member Posts: 406
    edited March 2011

    Sandy, thanks for the input...I'll pass it along to my friend.

    Heather - my heart goes out to you. I have identical twins boys and I see the intense bond between them. Do take to heart the wise words of the women on this board.  Therapy can be a great resource too.

    bdavis - I too was told I didn't have enough fat (stomach or hips) to have anything bigger than A cups...Dr S never batted and I but still wasn't sure if I was going to have enough hip fat for large B/small C flaps from my hips. So presurgery I was marked up (with the famous blue pen) for both stomach and hips (possible stacked diep).  In the end they used just my hip flap (got a mid-to-large B but still have stage 2 coming and aiming for a small C) - but what I wanted to say is that I had Dr. S and Dr T - so, there was the possibility of front and back and Dr T was still in on it.  I now have found out which Dr did which side and honestly can't tell the difference.  As someone else said - they are a well oiled machine and if Dr T wasn't up to snuff then he wouldn't be included.  But you should have who you want and hopefully they can accommodate you.

    Kathryn

  • Nordy
    Nordy Member Posts: 1,106
    edited March 2011
    bdavis - They can determine SO much by your photos... Really. I was told by other surgeons that I could "maybe" get 2 A cups with DIEP... Both Dr. D and Dr. S looked at my pictures and told Liz that they would be doing me a great disservice by doing DIEP. Dr. S gave me two larger B cups with hip flaps. You know, Laughines is very thin and so is Minnesota - they both have awesome boobs... LOL.. can you believe I just said that????LOL, breast cancer... Anyway, they both look so fabulous. Have you been on TimTam's site? My pictures (which I keep meaning to update), Jaimie's pictures and Laughline's are all on there (I know there are more, I am just thinking hip flaps right now). If you haven't, you can PM her for the info to get on the site. Have I said lately that I am SO jealous that NOLA is in network for you??? If I haven't, I am going to say it again... SO JEALOUS!!! Wink

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