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NOLA in September?

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Comments

  • gmp300
    gmp300 Member Posts: 196
    edited June 2013

    Thank you Maggie for the thread!  I knew dignitarna was close to gettin FDA approcal.  They have been doing many trials on their scalp cooling machine.  Penguin will be right behind them!  

    Russell - I can't wait either  I wish it was sooner!  I am on the if any cancellation list!

    Spring and Pink - like Ang - I don't want to hijack this so important thread, the penguin cold caps have their own but so many don't even know its possible to save their hair so I just had to chime in!

    Spring - Happy to share!

    Audrella - Most everyone gets their tattos at the end for the final cherry on the cake as I see it and thats what I thought! LOL! But my case is so different than anyone elses that I can not even begin to describe it, one day I'll post pictures but really I don't want to gross anyone out!  That is why I don't post much about me!  Lets put it this way - Dr. D said that I have the 2nd worst chest wall (due to the worst ps ever!) he has ever seen!   I must be very special since he has done hundreds maybe in the thousands of womens reconstruction!  LOL! This last revision didn't take but being the perfectionist that he is and caring - he was probably more upset than me (I think I am not full of great expectations after everything I have been through) and he said that he has 1 more thing up his sleeve which I have no idea what it is but I only can trust him at this point and he wants me to wait, let things settle and get the tattos first.  So be it!  I must say that I look better than I ever did but I still need some work for symmetry etc.  I really just want to look decent inmy clothes and bathing suit. It will happen - I am getting there!  Plus I really am taking a liking to going to NOLA!  I look forward to it! Ha!

  • New-girl
    New-girl Member Posts: 80
    edited June 2013

    I had my tattoos done yesterday with Vinnie even though I still have not finished my revisions.  After my 2b with Dr. T, he felt I could go ahead and get my tattoos and then do my 2c later.  I had hoped to do it in July but Dr. T was booked solid so I am waiting until October.  Symmetry issues and cleaning up the job from my first PS. Cannot say it enough how I wished I had started at NOLA but I agree with gmp, I look forward to going.  Most times I fly in and out the same day and I hope to soon get to stay and actually see the city.

  • KBodie
    KBodie Member Posts: 211
    edited June 2013

    Happy birthday NOLA in September?!

  • m1970
    m1970 Member Posts: 261
    edited June 2013

    You know there are some benefits to having experience with Cancer.  If I had decided to get a mastectomy 7 years ago when I first had cancer, I would have never heard about the DIEP procedure or NOLA.  I would have just taken what I was offered.  I was overwhelmed then by just finding an oncologist I was comfortable with, and I changed at the very last minute.  And as I am approaching chemo for the second time, I would have never heard about the cold caps. Thanks for providing that info Geralyn.

    I always said that if I had to do it again I would do it differently.  I would spend more time taking care of myself.  Less time trying to be a hero and take care of everyone else and working full time.  And since I'm single now, I don't feel guilty at all spending money on myself for things that make me feel good, or not pulling in a full paycheck while I'm on disability.  My ex would never have dared question it, but I would have felt guilty.  Why?  I can't really say.

    So I went in yesterday to start Herceptin and learned there are some issues with my heart function.  Not enough to not do chemo according to my onc, but I was really upset by it and I rescheduled it for next week so I had time to process it.   I had a feeling my heart was stressed and had been to the ER 2 times in the past year for it and they could never find anything, but having a test confirm that my heart function was really makes me nervous about doing more chemo.  I'm getting a Muga scan tomorrow which will give us a baseline.  I am very interested to know if there is a difference between now and the last Muga I did in 2007.  I don't know exactly how I will use that information, but I hope that I can find some way I can get to a place where I feel resolved about chemo.  I know that I have a 24% chance of recurring, and I can reduce that by half with chemo.  That is not insignificant.  But right now I just do not feel right about what other health issues I might be inviting.  I hate this conflicted feeling.  I hate cancer.

  • m1970
    m1970 Member Posts: 261
    edited June 2013

    grt42btexan - wow, you can do tatoos before the revision?  I think the tatoo part would be fun.  I picture me and my girlfriends driving up to Baltimore and making a weekend of it. 

    23,884 posts.  That's pretty amazing.  Honestly I would not have gone to New Orleans if it were not for this thread and I am pretty happy with how I look.  Thank you guys for the support and important discussion.  The internet can be an amazing place.  I can't imagine how I would have navigated this experience on my own.

  • mstrouble16
    mstrouble16 Member Posts: 177
    edited June 2013

    Well my consult with Dr. D has been pushed back till Tuesday, on well, I know he always has a very good reason for rescheduling.

  • mags20487
    mags20487 Member Posts: 1,092
    edited June 2013

    woo hoo for 4 yrs!!!

    Still hugging you Marsha!  I agree I would never have known about NOLA if it were not for this thread.

    I venture to say that I felt better yesterday.  The pain was not as intense on my behind for a change.  I have had few days since March that I could actually say were good days physically.  Things may just be turning around and maybe this butt will finally heal

    Today my hubs and I celebrate 27 yrs of marriage together!  Cannot believe I am that old!  Having dinner with friends tonight!  May today be a great day too!!

    Maggie

  • m1970
    m1970 Member Posts: 261
    edited June 2013

    Mags -- congrats on your anniversary!  I do hope things are turning around for you.  It's just got to get better from here.

  • MartyJ
    MartyJ Member Posts: 819
    edited June 2013

    Spring - thanks so much for "mothering" this thread for 4 years.  Gotta be a record.  Thank you so much for helping all of us.

    Maggie - Happy Anniversary!

  • mags20487
    mags20487 Member Posts: 1,092
    edited June 2013

    thanks ladies.

    Marty---making plans for my Aug surgery in Charleston...do you know anything about Wild Dunes on Isles of Palms.  Several condos available for rent on the beach...may as well make it fun

    Maggie

  • lastar
    lastar Member Posts: 553
    edited June 2013

    Thank you, Springtime, for making time to help others following you down this path. It's an amazing service that you provide!!!

  • chellehump
    chellehump Member Posts: 374
    edited June 2013

    Thank you Spring for this thread and to all the others that keep it going. HAPPY BIRTHDAY!!!!!
    This thread helped make a very scary journey a little easier :) All of you are such strong and amazing women!!

    I did something to myself Tuesday (I believe working out) that caught a nerve in the mess I have going on back there. I had asked Laura about this a month ago and she said it was possible to have nerves wrapped up in the scar tissue. It was so bad yesterday that I left work and worked from home with a pillow under me and my feet up to relieve some pressure. I have been massaging the area (like the PT showed me) in hopes of releasing whatever is being pinched. I had my hubby do it and I think that helped more, but it's not resolved yet. I am working from home today again cause I didn't want to drive and sit in traffic. The drive home yesterday was painful enough. Surgery is 6 weeks from today.

    Chelle

  • Russell1
    Russell1 Member Posts: 413
    edited June 2013

    Thanks so much Springtime!!!! Hugs!!!!

  • Russell1
    Russell1 Member Posts: 413
    edited June 2013

    Chellehump..so sorry you are dealing with this pain! Have you tried hot bath with epsom salt and peppermint oil? I read where this can ease aches and pains as good as pain meds. Worth a try:)

    Thanks ladies for info on garments.

    I had my onc. appt. It has been over 2 yrs. since my diagnosis. I was told I would only be seen evey six months now. I have a pet scan in December. Scared to death of those tests!!

    Marsha...Can you get a second opinion? I would be confused on what to do also. Trying to outweigh the risks and benefits is hard with this.

  • MartyJ
    MartyJ Member Posts: 819
    edited June 2013

    Maggie - I live in Wild Dunes!  It is a perfect location to recouperate after your surgery.  PM me and let me know which units you are looking at and I can let you know you best options.  Too bad Jamie is 2 weeks before you or we could have a mermaid party.

  • m1970
    m1970 Member Posts: 261
    edited March 2014

    Chelle, Wow, I am so sorry you are still dealing with pain issues.  Do you think they might be able to fix what is causing it in your next surgery?

    Got my kayak out on a pond today.  So good for my soul.  It was pretty leisurely and I'm swelling a little, but no more than if I take a good walk.  Yesterday was worse when I tried moving my kayak ... not ready for that clearly.  Someone thankfully helped me when they saw me get ready to put it on my car.  What was I thinking?

    I had this photo taken of me yesterday to post to facebook to show off my new figure.  To appreciate this fully you need to know that I've lost 40 lbs over the last year.  Now before you congratulate me, I don't know why I got so heavy in the first place and then I developed a GI issue that made me loose weight rapidly.  No one could explain my GI issue (still) so  I changed to a very restrictive gluten free, dairy free, whole foods diet which helped my symptoms and continued to loose weight.  So I was looking pretty good, except that my breasts were too large for my new slim figure.  Now that I've gone from a DD to a C, I can fit into a formal dress I have from my 20s.  I have to say I feel pretty awesome about how I look, and I hope the steriods don't make me fat again.

    Me: June 2013

    <<Photo Removed>>

    To really appreciate the photo above, here is a not very attractive photo of me May 2012.  I am on top of the Via Ferreta in Circleville WV.  Not sure how long I will leave this one up...this is not how I want to look!  I will need to get back to the Via to retake this photo!  I wonder how long it will take before I am up to that.

    Me: May 2012

    <<Photo Removed>>

  • ssla01
    ssla01 Member Posts: 216
    edited June 2013

    Marsha, you look great!!! Congratulations.

  • mags20487
    mags20487 Member Posts: 1,092
    edited June 2013

    marsha.....adorable!!  Love the dress too. 

  • Springtime
    Springtime Member Posts: 3,372
    edited June 2013

    Congrats Marsha!! You look fab! 

  • klanders
    klanders Member Posts: 152
    edited June 2013

    You look beautiful, Marsha! Pretty inside and out!

  • m1970
    m1970 Member Posts: 261
    edited June 2013

    Thank you guys.



    On my phone the second photo is squished to portrait making me look thinner than I really was. Funny thing is that everyone assumes because I LOOK healthy and thin, that I must feel that way. When in actuality I have had to severely limit my activities due to lack of energy, a feeling of weakness in my heart, unpredictable bowels all over the past year. I would give anything to feel the way I did a year ago, even this body. But I might as well enjoy the body, right?

  • MartyJ
    MartyJ Member Posts: 819
    edited June 2013

    Judy_63, Maxine and SSLA01 - have a wonderful week.   Enjoy NOLA!  A stage 2, stage 1.5 and stage 1 - we will look forward to hearing from you soon!

  • Judy_63
    Judy_63 Member Posts: 129
    edited June 2013

    Thanks Marty, we had a enjoyable day today. Got a lot of sightseeing in before I head off to surgery tomorrow, cause after I don't know if I'll be in the mood for much moving around. Will try to keep everyone posted.

  • mags20487
    mags20487 Member Posts: 1,092
    edited June 2013

    I cannot believe I missed my call from dr m...errrrrr I need to talk to her sooo bad. Really hope she can call me back tomorrow. My butt hurts so bad and that freakin antibiotic is making my joints hurt..not to mention the extreme fatigue. I feel like a slug! Crying off and on all day. The end



    Maggie

  • ssla01
    ssla01 Member Posts: 216
    edited June 2013

    Thanks Marty! I can't wait to be in Dr. M's capable hands!



    Good luck Judy!



    Sharon

  • Judy_63
    Judy_63 Member Posts: 129
    edited June 2013

    Thanks Sharon..good luck to you to. Hope maybe to meet you Thursday, if not maybe we can meet sometime in Springdale or Fayetteville.

  • ssla01
    ssla01 Member Posts: 216
    edited June 2013

    Absolutely!

  • MartyJ
    MartyJ Member Posts: 819
    edited June 2013

    Maggie - text her!  I am so sorry you are going through this again.  Aaarrrgh!

  • mags20487
    mags20487 Member Posts: 1,092
    edited June 2013

    I did leave her a message to call back..hopefully today

    Maggie

  • mags20487
    mags20487 Member Posts: 1,092
    edited June 2013

    she just called...off the levoquin immediately...it can cause tendon rupture which explains the head to toe pain in all the joints...also wants me to slow down.  Drain is way too juicy and if I develop seroma/pseudobursa  again I may never get my butt fixed, that would suck!

    Maggie

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