NOLA in September?
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Hey Ladies!
Sounds like all the ~4 weeks out ladies are doing well! Side sleeping does get easier and I must say I've gotten some of the best sleep on my life the last couple of days...can't wait for the option to sleep on my stomach!
Things are going great for me 5 weeks post op! Funny experience today, I did my first long drive, a little over an hour, to go to Napa and meet another BRCA+ lady for lunch-it was totally doable. She's in Sacramento so we met half-way. We've been chatting via email for a while so it was great to meet in person-she just had her ooph and is planning on having her PBM with DIEP in the late summer/early fall. She's having the same issue I had with the local Norcal doctors (not having enough fat, not feeling they are experienced enough, etc) Anyway, she is considering going to NOLA and is talking to Vicky about insurance, etc. I've been answering her questions and encouraging her, while trying to be supportive of whatever she decides-of course I think she should go to NOLA and want to scream it from the rooftops but trying to be objective :-)
Anyways, after a nice long lunch we headed in to the bathroom so I could show her both my breasts and all my scars-it was amazing because SO many women lifted up their shirts for me and helped me along this process so it was great to be the one doing the shirt lifting and the helping! Anyways, she was the first person other than the SCSH staff or my husband to see things and she was extremely impressed-best part was she said, "Well, that sealed it, I'm going to NOLA!" and she told me I looked BETTER than the photos they have up on the NOLA website...amazing to get outside opinions and also amazing to have facilitated someone else going to NOLA-I hope she joins us on this thread soon!
On Sunday I'm heading down to the Bright Pink SF chapter launch party (if you all are not familiar, BP is like FORCE in that it's for high risk/BRCA+ but it skewed to younger woman in their 20's and 30's mostly) to speak about my experience at NOLA and to probably show a couple more people my results. Here's hoping for more NOLA converts in the next couple of days!
Oh and if anyone wants to friend my on facebook my name there (and in real life) is Dana Bushman
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Laura - I probably won't be drinking the real stuff - but maybe a Shirley Temple - like when I was a kid so I could feel like a grown-up
It will just be nice to socialize and relax. Cider, I felt similar to how you felt - worse in the mornings. I think it took an hour or two before i hit my stride. I also waited about 6 weeks to attempt side-sleeping and I would have to get in place before I fell asleep because I couldn't easily roll to the side. But by 8 weeks it was much more natural and eventually I could lay on my stomach. And like I said, the pillows sewn on feeling does go away and they start feeling like your own.
My oncologist wants me to do a baseline MRI - not the same as someone running a paddle over me but still not sure what I think about them hanging down the holes either.
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Dana - that's awesome how well you are doing! I'm also BRCA+ and am the postergirl at the FORCE meetings. Unfortunately, I would not qualify for Bright Pink, but I know I've given a lot of support and encouragement (without trying to seem like a crazy woman shouting about NOLA) to a lot of the women. There are three currently interested in going after my "show n' tell." Spread the word!
Oh yes, and I have square breasts on the bottom too - can't wait to see what Dr S does in Stage 2!
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My 19 year old son developed severe abdominal pain last Thursday and by 4 a.m. Friday, I had to take him to the ER. Took a couple of hours for diagnosis, and it was his appendix. Poor guy had to wait until 2:30 p.m. to be taken into surgery. It was hard watching him suffer the extreme pain. They shot him up with at least 7 doses of morphine in just the first hour, and it was still hurting him. Surgery was laprascopic, but he is still in a lot of pain. Thankfully, no rupture. The doc told us that many people wait 2-3 days before they go to the ER with it, and I have no idea how they tolerate the pain for that long! A young bride I met at a show on Sunday told me that hers ruptured and they took it out from the front, then had to open her up from the back to get all of the mess out of her. UGH!!!!
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Oh Sandy - so sorry to hear it! My husband's appendix came out several years ago--he said he was in pain for a couple of days before hand but it was tolerable and it wasn't until 3 days later that it was so bad he could barely walk and got himself to the hospital--just has they got him in for surgery his appendix burst! So sorry to hear about your son--husband said he was feeling better in about 4 weeks so hopefully your son will be feeling better soon...so lucky that they caught it before the rupture!
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thanks Kathryn! I'm the old lady at the Bright Pink gatherings at the ripe old age of 35! I can't imagine having to deal with this in my 20's like so many women I've met are--happy to have had several years of ignorance and to be (almost) out of the woods.
Is it mad that I'm looking forward to going back to NOLA for my stage 2 on 8/16? Who looks forward to surgery? haha!
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Dana, I'm looking forward to my Stage 2! I think they brainwash us.
In retrospect, I was totally feeling euphoric from the pain meds. My stage 2 will probably be at the end of this year, though. My last chemo is mid Sept. Laura told me stage 2 could be a month after, but Dr S told me 3 months at post-op. I just can't see being ready for surgery one month after chemo! Especially this dose dense stuff. Dana and Kathryn, way to go swaying some patients to the NOLA side!
Marcia, thanks for letting me know about your non-issues regarding losing all those nodes. It's reassuring.
Sandy, I hope your son is recovering well.
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I too look forward to going back to NOLA, for the experienece, the surgery all of it! I
it there!!! Funny, my friend said to me the other day after I had my pre-op testing done. Geeze, you sure go through a lot for a vacation girl!! 0 -
Sandy, what is it with these boys? My 19 year old had the same thing happen last fall - he was 18 at the time. He was super-sick for about 7 hours and in pain, and I knew it wasn't the flu, food poisoning, alcohol, etc. I just knew. Husband grudgingly said, ok, ER. It was Friday of Labor Day weekend, also only 2 weeks into first year at college. Anyway, ER at 5pm, diagnosed by 8 pm, appendix out by midnight! He went back to college about 5 days later, and felt normal again within a couple of weeks.
Paula, I did not do dose dense, but I did cytoxan and taxotere, and had surgery 6 weeks after my last chemo. Basically, had surgery March 14 (breast reduction),mastectomy April 9, started chemo one month after that (May 14-July 18), implant surgery Aug 31, ovaries removed Oct 28. Busy few months. Anyway, I would say by 3 months you should be in good shape for stage 2. Prayers for a good chemo experience. Well, you know what I mean . . .
Dana and others, I think it is so cool that everyone is spreading the word about NOLA. Jeanine sent me some brochures to take around with me when I see my local docs, and also I will be stopping in to see the local woman who owns the shop where all the women go for wigs, bras, forms, etc. She is the most amazing source of info, and a huge support to so many women. Not a BC gal, but her mom was, as this is her 'ministry'. Might even go see her today!
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Amy, the woman who runs the local breast cancer boutique (wigs,hats & all info & support) was also very interested and wants me to be a mentor because I have so much knowledge and I'm upbeat !! I really think most women don't know the options out there..jeez they are gonna need to hire more Dr.s when we all get done hahaha
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Hey, as long as I can get a "room" when I am there . . .
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Sandy - so glad they caught it before it ruptured. Hope he makes a swift recovery.
I couldn't imagine going back for stage 2 right after my surgery. I felt funny setting the date...but then I hit the 8 week mark and I couldn't wait. People couldn't understand why it was such a huge issue and disappointment for me to have to postpone it. But I can't wait. I leave on Tuesday AM!
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I understand, I wanted stage 2 done asap! I had my stage 2 exactly 8 weeks out from stage 1. It's been 6 or 7 months now from stage 2, so hard to believe really! At least now Dr S will have a good idea of how things are shaping up and settling.
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With all of you looking forward to surgery, someone should sign up for JULY... I am all alone
My surgery isn't going to take the whole month... I need company.0 -
Betsy, I swear if we weren't so busy and traveling most of the month of July, I would fly down there just to give you company! That's how much i loved it there! Funny, I had only been to New Orleans one other time, and that was about a year after finishing my chemo, surgeries, etc. I did not love it. And there are so many things about that trip that I don't even remember. I guess alot of it was my frame of mind at the time. This time, having gone there for such a great reason, and knowing that I would "be myself" again after all of this is done - well, I felt completely different and cannot wait to go back. I loved the food, I loved walking along the levee when we were out at Hope Lodge for a couple of days, I loved standing along the river near Cafe du Monde and feeling the breeze on a hot afternoon, sipping my Cafe Au Lait. . . wait, I think I may cancel my other plans and join you down there. I am a pretty good hand-holder . . .
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Betsy, don't worry, the calendar will get filled up. You're still over a month out. People who aren't on the board will start filtering in, others who are on it who don't have dates yet. I've now gone through it last month and this and each time I ended with buddies! Wish I could go down with you and share some biegnets!
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I 2nd what Kathryn said. When I put my name down for June no one else was going, now it looks like a few of us will be there at the same time. I've been 2 times to NOLA and have always had a buddy or 2 there.
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Ok... I guess you are all right... I am sure someone will come along... who knows, maybe someone who is just doing their homework now. I know that I planned my surgery well in advance, and others may not plan that far ahead.
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Plus depending on where you stay, I met ladies that were at the center just like me and we connected that way.
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where did you stay Erika?
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Betsy, I got my surgery scheduled in about 3 weeks, so there is still time for buddies to be added. It must feel odd being the only one here scheduled so far, though. Hang in there!
I just talked to Stacy from Dr S's office. My first follow up call because I'd been emailing Laura all along. I asked about scheduling Stage 2, as Laura said 4 weeks after chemo and Dr S had said 3 months. Stacy told me it's closer to 3 months, unless I handle chemo very well, depending on blood counts, etc. 3 months puts me at mid Dec. She also said Dr S kills the nurses with fitting in his patients before the end of the year! "Kills" was her word, not mine. So Dec is a bear for the nurses!
I told her I'm on this thread so I've gotten to know the whole NOLA vibe better. She liked that. She told me to wait until mid-chemo to schedule Stage 2 and to make sure my onc sends all my progress reports to Dr S. They like to keep an eye on us.0 -
Betsy, I am keeping my eye open for July surgeries!!!
Glad everyone is upbeat and doing well. I read some about breast pain, I had that too and it did take some time to resolve, but slowly, it did get better over time. My bobbies are perfect and painless now. You will get there!!!
Ro!! Glad you are down to the last drain!!! How much is that one putting out per day??
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Spring, All this time looking at your profile picture, I've never asked about that beautiful horse!! Is it yours?? I love horses, haven't gotten to enjoy them since I was a kid. But now I moved up to Saratoga and I'm surrounded by horse farms!!
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Questions---
Glue is flaking off at what point can I apply some sort of scar cream to the incision?
At what point did you transition to a regular bra/sports bra?
Planning to pull the drain tonight!!0 -
Hey, Ro! I haven't been told it is ok to use any scar cream. I know my other PS always had me wait two months, but good question for sure - maybe call Monday, then let us know! I was wondering that today myself! At 4 weeks I changed over to a regular bra. Fruit of the Loom makes some nice soft cotton ones (sold at Walmart) that have hooks in the font and are basically very similar to the surgical bra, which I actually found comfortable though a little itchy. But everything is itchy for me. My understanding is with the "sports bra", you just don't want a lot of compression. And of course, no underwires.
Yay for being drain free!! My friend pulled mine - super easy and I didn't feel a thing! Except relief! Hope you are feeling good and pain and drain free!
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Okay i pulled the drain but the drain hole is tender.. Feeling relieved otherwise.
Did anyone's stomach incision peel?? Yikes
Ro Gamble
Diagnosis: 4/3/2008, IDC, <1cm, Stage I, Grade 3, 0/7 nodes, ER-/PR-, HER2-0 -
Hey Ro! Can't remember if you are Dr. S or Dr. D cause I know they have different rules but in looking at my sheet from Dr. D they said betadine on the scars while/after dermabond is flaking off and that can be discontinued the third week after surgery. When I spoke to Laura I asked her about scar cream and she said it was fine to use something after all the dermabond fell off and as long as the incisions were all closed. For me that was at about week 4 but definitely ask them.
Regarding bras, they said to wear the surgical bra for 2 weeks after surgery around the clock and then surgical and/or sports bra after that for comfort. I HATED that surgical bra after a while as it really chafed me, especially under my arms...Personally I hardly ever wear a bra and am usually wearing some sort of shapewear with a shelf bra or a bra top cami but your mileage may vary. Defintely no underwire which is sad cause I have SO many nice underwire bras, but I'll get over it! :-) Hope this helps.
Yay drain free! I know my drain entry sites ached for a good 24 hours after I pulled my last drain so maybe that is what you are feeling. That neosporin plus definitely helped after my drain was pulled to help numb up the entry point while it scabbed over. Hope you (and everyone else) are feeling a little better every day...
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Hi Dawn, that is not my horse! We were visiting the Biltmore Estate and they had that old retired draft horse named "Chester" there, and he was such a sweetie, I was talking to him in that shot. I used to ride as a teenager in 4-H and then in college on the "Equestrian Team" if you can believe it!! I never had my own horse. But I love them too!
Ro, YAY for being drain free! That sore spot will heal up in time, hang in there!
About scar cream. I use Maderma on my scars for a long time while they are still red or pinkish. When they become white-ish, I use Palmers Massage Creame for Stretch marks. This works for me. My old scars are tiny thin white lines. I think I would scar like this anyway, but doing this makes me feel good - like I'm doing all I can do!
Bras - My boobs were so sore after Stage 1 that I skipped a bra for many weeks. I slowly started wearing the lightest ones I could find ("barely there") for a few hours a day then built up!
Here are the surgeries coming up!!!
June 14 - JustLaura - Stage 1 mastectomy and DIEP in NOLA with Dr D and Dr Legarde. June 15 - LeslieT - Stage 1 stacked bilateral, NOLA with Dr. S June 15 - Surfagirl - Consult w/ Dr. S.June 16 - KathrynLA - Stage 2, NOLA.
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I haven't had nice bras in 4 years since nothing fit with my implants. I did notice that a lot of the really pretty bras are underwires. Not that I am in any hurry to wear underwires, as I wore them for as long as I can remember before my MX, but down the road, are we allowed to wear them for a few hours or so once in a while? But I imagine there is a lot of pretty stuff out there without wires as well. I would love to get some pretty lingerie! Finally!
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Yes.. I want to know about underwire bras... After reading I am wondering if the underwire thing is for now or forever???
And Spring and Dawn, I love horses too... am actually in search of a farm to move to... but of course my plans have been delayed to due the BIG C... and also because my husband's job was moved to PA, so our search location has changed a bit.
And Spring, you were just in NJ, weren't you?? Much cooler today.
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