NOLA in September?
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Camiam - I've had a SNB on both arms and have used both for blood draws/iv's with no problems. Actually 4 rounds of chemo through IV and all the blood draws alternating arms. No problems. Did a doctor tell you you could not use your arms? I know they prefer the arm that has not had a SNB if you've only had one... but with me... I've used both and no doctor/surgeon has even suggested another area for blood draws.0
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So it sounds like everyone handles it differently. Thank you for your replies! It makes me feel better also to hear from SNB ladies who have had arm sticks and have been fine. I've heard from most of my docs that it's fine to use a SNB arm for blood & IVs, but I've also more recently read that even with SNB, there's always a risk for LE, every time you have a stick, so it's got me worried enough to not want to do it.
I had mentioned my dilemma and the 3 unsuccessful foot sticks to a friend on Facebook who happens to be a phlebotomist, and she had me meet her at her hospital lab this morning. She said she has 2 BC patients she has experience drawing from ankle veins, and she wanted to help me. So I went, she used a tiny butterfly needle, and she was able to get enough blood from the front of my ankle (really more like the front of my shin). I hardly felt the stick! So, whew, I got the blood drawn. She did have a co--worker there who rolled his eyes at me and said, "as long as we don't use a tourniquet, it's not a risk for LE". Huh??
Kcshreve: I *knew* I'd read here before that someone had had an IV in their neck. Was that bad?
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Wow, I was just reading over on that thread where someone was asking about GAP surgery, and all us GAP/Hip girls really represented, didn't we?
I think it says a lot about this practice (and others like it) that so many had either no pain or at the very worst, quite tolerable pain from the donor site. 0 -
Nordy I have been meaning to ask you how your heal is doing? I have had you in my thoughts and prayers
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Hello - can I join this thread too?
My story is this: diagnosed with multifocal ER/PR negative DCIS a few weeks after I turned 35 in March of this year. I am the mom of 2 great boys - now 1 and 3 and have been married to my college sweetheart for 9 great years.
Opted for BMX (glad I did - 2nd look at path by Mayo and Dr. Lagios found precurser lesions on "prophy" side). I had wanted DIEP but was told I wasn't a candidate (I am sure this statement is going to generate a lot of boos!) so ended up with B free TRAM on 4/14/10.
My surgery was 14 hours long and was complicated by 9 gram hemoglobin loss, postoperative pressure alopecia (had a 3.5 x 5 cm bald area on the crown of my head, thankfully now it has all grown back in except a fingernail sized area), iatrogenic abdominal hernia x multiple (so now I have proline mesh in my abdomen), postoperative pseudomonas abdominal drain site infection (had to self-refer to infectious disease Dr to get this treated) and extensive skin flap necrosis of L>R (at one point I had an 8x4 inch open wound on my left breast.) Thankfully the flaps themselves are healthy.
My local PS "the best in Chicago" who was recommended to me by my BS, onc and OB/GYN told me to "get over" the skin necrosis as he was "ready to get over it" himself (!)
So I obviously needed to make a change. I did some research, talked to a few people (thank you thank you thank you Sandy!) and the long and the short of it is that Dr. D agreed to take me on as a patient!
Which brings me to now. It took 13 weeks and 1 day but with the help of Dr. D and the Rehab Institute of Chicago's Wound Care Clinic I am happy to report that I finally healed up! Dr. D gave me the "ok" to schedule for August for my first (of probably many) revision surgeries but I don't have a date yet as I am waiting to hear back from the Center.
Nice to "meet" you all!
-Meredith
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Welcome Meredith! okay.. wow you have been through an ordeal.... I'm glad you found your way to NOLA... I'm sure Dr. D will help you....
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Welcome Meredith, Dr D is my surgeon, so I can tell you that you are definitely in good hands. So sorry for all you have gone through. Healing thoughts and prayers that things are going to start going much better!
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Hi Meredith-
I'm in Chicago as well, and went out of town for my surgery (Dr. Massey in Charleston) after surveying the PS options in Chicago (i.e., not as good as one would think). I'm sorry you had so many complications and I'm glad you've finally healed. Dr. D will take good care of you!
I didn't realize RIC had a wound clinic, that's good to know. I ended up going to Advocate Illinois Masonic's wound clinic when I had to have a small incision area debrided. They were good, I'm just not a fan of IL Masonic.
If you'd like to chat or if you need anything, feel free to PM me.
-Brenda
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Hi girls!
Gosh here we are in the dog days again! Thank goodness for AC and wicking fabrics and OMG the crepe myrtles are spectacular this summer. Need to take some pics and post.
Nordy-how is the injury? Did you see the orthopod yet? I have been having major exercise motivational problems-can I blame on the heat? Tried to remedy by buying new running shoes last wkend and even wore them to work this week, plenty of compliments, but never made it to the treadmill. And outside? Um- no way right now! Oh my but it's hard to get back to working out after slacking! A friend I used to rollerblade w/ (our educator at work)wants to train w/ me for the half so yes I'll at least be walking.
Sandy and Eve; I read both of your essays and they are great! Very well written. I couldn't figure out how to vote?
Still haven't finalized driving/flying?-since I now have a training partner who is really in need of a girls' wkend-but has a husband/son trick or treat obligation in DFW-. I'll probably fly and will be in Nola early am 10/28 so yes count me in that evening.
I really like the whole concept of educating women on this topic. It's quite interesting to see what info and how much info women are given-BUT such a delicate balance of how much women can handle when being blown away w/ diagnosis and having SO much info thrown at you. I'm still so grateful I rec'd the Kathy Steligo book from my local PS when I was finally able to be 'worked in' a couple weeks after diagnosis-even tho they typically see breast pts in 48 hrs. I think that was the first of many steps leading me to CRBS. Honestly I still think there was some divine intervention too-EVERY time I tried to schedule or have a surgery w/ him(local guy who I still love and work w/) something got in the way-or someone in his office annoyed me enough to make me keep looking. Yet the communication w/ Nola/CRBS, even tho sometimes a week between, the phone calls returned seemed to always coincidentally come on my days off when I had time and privacy to ask ALL sorts of questions, talk about money etc. I did a survey this week too from BC.org...Maybe thru the new study MAP=Mind affects the physical? asking how I was presented w/ recon and the whole recon experience....anybody else get that in their e-mail?
On the heat and wearing compression topic; Bike shorts in wicking fabric have become interchangeable w/ panties for me. I think I bought some off the Champion website.
Wow YES I remember all that preparation for sugery.....leg waxing, mani pedi, hair colored cut, highlighted, etc, etc and yes it was Stephanie-Macksix who was queen of the Brazilian. Don't forget about the AFFIRMATIONS! I need to review having some affirmations about the treadmill, exercising, bikinis, and looking like Marcia. LOL
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Welcome Meredith... I too am a patient of Dr D's and I had issues with my first surgery the incision just did not heal and it was all black so Dr D sent for me to come back and he redid the incision looks great now. I am going to be in NOLA on August 17th and have surgery again o August 20th I dont fly home (NY) until August 24th so if you are there then I would love to meet you. He truely is amazing, the whole place is actually amazing. Glad you joined the thread' Sally
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Welcome Meridith! I am a Dr. D. girl too. You're in good hands!
Cam, I had SNB on one side, but that is where my good vein was. For a long time, I had a lot of "digging" in my right arm and terrible bruising every time I went for a blood draw. Finally, I realized it was sort of my job to find a vein and get it up and "present it" to the techs. So I have found a vein that by warming and slapping and "attention", (and being VERY hydrated) I can get it full and fat, it's near my wrist. I point them to that one and have had no issues.
So If I was you, and you really want to stick to your feet, I would practice at home what you need to do to get a vein up and big and fat and easy to stick. smack it, warm it, massage, whatever.
The last time I went in for my Zometa, the nurse said, "you've certainly done your part of this!".
Just an FYI. Try taking it upon yourself to get ready for it - just a thought.
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Spring- GREAT tip! I'm going to do that! Hopefully I'll find a "special" vein down there! I hate that my right arm has always had a big, juicy vein that made all the phlebotomists drool, and now I can't use it anymore.
Meredith, welcome! So sorry about your experience before, but I believe you'll be very happy with how things turn out with Dr. D.
Even thought I'm on team Sullivan. ;-)0 -
Welcome Meredith! You certainly have been through a lot. Shaking my head and the comment about "just getting over" the skin necrosis. I'll be in NOLA the same time as Sally (mid August) getting my implants removed and having stage one DIEP with Dr D. So keep us posted on your surgery date.
Amy
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Meredith - My heart aches for all that you have been through - but now you will be in excellent hands. And I am saying this as a patient of Dr. Sullivan's!!! But you cannot go wrong with either of the docs there!
Okay ladies - I had my stage 1 last year on August 20th... it is a great day to have surgery, if I do say so myself!
Sally & Jenn - No, I haven't seen the ortho - I took a week off from running and got so that I could actually put weight on it, then I ran again... LOL... Bad patient. LOL I did fine although my heel is a little sore, it is nothing like it was the week before. So, I think I will run one more time before my triathlon next weekend and call it good. I need to work on my swimming the most anyway. And biking should be okay! Jenn - yes, you can absolutely use the heat as an excuse. I hate the heat. Anything over the mid 80's is too hot for me. We rode this morning 33 miles and I pulled my girls (an extra 95 pounds including the trailer) so I was dead when I got home... and my cyclometer said it was 100 degrees at 11AM. UGH. So, I think it is a great excuse!!!
As for the blood draws - I don't think it is so much the stick itself that is the reason for concern - it is the inflammatory reaction that is possible IF you were to get an infection from the blood draw. And although the tourniquet is not good for lymphedema risk (just think, they don't want your BP taken on an at risk side - and how much tighter is a tourniquet?!!! ) it is not the only reason that blood should not be drawn from an at risk arm. Also, there was someone on here (sorry, can't remember who... maybe Warrior?) that they ended up placing a central line for surgery. Just know that in my honest opinion, the Center and their staff are most likely prepared for ANY scenario. They have been doing this so long and with so many people - most everyone a breast cancer survivor with at risk limbs, that I think it will not be an issue for whatever kind of venous access they need to place!!!
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PS - Sally - congrats on your new "someone special!!!"
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IV- NECK - they used my neck for my Stage 2 after I developed LE after Stage 1. My foot was not discussed for surgery. I understand they used my foot for the blood pressure, which is taken every 5 minutes throughout the surgery. I was ready for them to use my neck, since I have LE on my right side and absolutely, no way, want to develop LE on my left side. One side is enough to deal with! The neck is not a huge deal, as long as you know ahead what to expect. For them to get to the spot they need, they tilt the table so your head is a bit low and your feet are a bit high. They have you turn your head away, exposing the area. Then they numb it well with a couple tiny needles. from there, you don't feel anything. It's taped well, so when you wake up it can't be moved or disturbed easily. Really, it's just fine. I would do it again since the research indicates the non-LE arm is now "at risk", and I personally cannot stand the idea of having LE on both sides. I'll do whatever I can to avoid it. No blood pressure in either arm. Bloodwork from my foot.
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Ladybug - When are you flying into NOLA and when is your pre-op? I have post-op on Monday at 10:15 - I'm wondering if you might be there for pre-op then.
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Minnesota,
My pre-op appoint with "Sally" is at 9:45 am. I have a CT at 10:00am.My appoint with Dr D is at 11:15 and the BS @ 2:30...So I will be around there somewhere most of the day. we are driving the day before and will be at STaybridge.
If anyone knows the area, how easy is it to get from Staybridge to the center. Like if my kids come, can hey walk (it is only 1.5 miles but don't know if it is a walkable area?) or get a streetcar?
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Ladybug,
I'd have them take the streetcar. Start by walking North (actuall NW) on Poydras and they can catch the St Charles Streetcar at the intersection of St Charles and Poydras.Here is a link to a Map from the hotel to the SCSH.
http://www.ichotelsgroup.com/h/d/sb/1/en/hotel/msyps/transportation/custom-directions?start=1
Best wishes on your upcoming surgery and gentle hugs for all you have been through.The Cnetr will take such ggod care of you!
Marcia
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Ladybug - Maybe I'll get to see you then!
Cat - Good luck with your pre-op tomorrow!
Lynn - You should now be safely at Bienville House, right? Have some fun tomorrow! Iced coffee at Cafe du Monde!
Me - Basket case! Hot flashes!
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Hi Meredith! Great to hear from you! I know you'll see so much improvement with each revision that you will want to see this through. I am up late booking upcoming travel and just planned my Chicago trip for first week of October. I haven't had a chance to visit this site for several days and wanted to catch up with everyone. I can't believe July is almost over. It's still not summer here in L.A.--still cool, overcast every day, typical June weather.
Cat, Lynn, Minn....my best to all of you. I'd say I wish I were there with you, but I think I'll wait until the heat and humidity are lower. Much harder to tolerate when you add hot flashes, too. Minn, you know how I stop them when I'm there. Are you prepared?
Nordy, I'm glad you're doing so well. I can't imagine how you manage to do what you do in that kind of heat!
Jennifer, I think it's clearer how to vote now that they've chosen finalists. Minn and I didn't make the cut, but there are five great stories to choose from.
Spring, where are you with booking something for yourself in October?
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Good Luck to all of You this week!
Wow, Sounds like a Party should be happening
Jul 23 - 2Tzus - Stage 2 DIEP, Dr. S., NOLA.
July 28 - Cat1 - Stage 2 & Hysterectomy, Dr. D., SCSH, NOLA.
Jul 29- Sheridangirl - Stage 1 bilateral free hip flap, Dr. S., NOLA.
July 30 - Sueinfl - Stage 2, Dr. S., NOLA.
July 30 - Minnesota - Stage 2, Dr. D., NOLA, SCSH
Melinda How are you doing?
Oddball Hope you are doing good.
Welcome Meredith! I am a Fixer Upper too!
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Should we start a List with Who will be there in Oct for the Get together/fund raiser?
I hope to arrive Wed the 27th.
My Surgery is Nov 1st...I have Tentative Tatts on the 2nd.
Fly home on the 4th
I will be at the Clarion
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Good Luck to all of You this week!
Wow, Sounds like a Party should be happening
Jul 23 - 2Tzus - Stage 2 DIEP, Dr. S., NOLA.
July 28 - Cat1 - Stage 2 & Hysterectomy, Dr. D., SCSH, NOLA.
Jul 29- Sheridangirl - Stage 1 bilateral free hip flap, Dr. S., NOLA.
July 30 - Sueinfl - Stage 2, Dr. S., NOLA.
July 30 - Minnesota - Stage 2, Dr. D., NOLA, SCSH
Melinda How are you doing?
Oddball & 2Tzus Hope you are doing good.
Welcome Meredith! I am a Fixer Upper too!
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Good Luck to the ladies who are at NOLA.
Cat1 let me know how the stage 2 was for you. Margaret called today about info. 3 more weeks WOW Is your sister with you? If so tell her hello.
Prayers to all
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Thanks for the welcome everyone! I hope everything goes well for those with upcoming surgeries!
I am still waiting to hear back with a final date from Jeanine for "stage 1.5" but it is looking like early August - yay!
In the meantime, my one year old bopped me in the left breast this weekend while I was changing his diaper, so a small area of the left scar blistered and opened back up. I only lasted 2 weeks without a dressing in my bra - LOL! Oh well, Dr. D will hopefully be able to fix this up soon enough.
Anyway, I do notice some swelling in the bottom of my breasts after being up all day. I am 15 weeks out of stage 1 - has anyone else experienced this?
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I am 9 weeks out now, from bilat max w/SGAP w/Dr. D. at St. Charles, and am feeling SO much better! yay! I finally removed my hip drains last weekend. That helped tremendously - as much emotionally, as physically. It was super easy to pull them myself. Most of my friends thought that I'd need to go see a doc to do it, but I couldn't even feel it. 8 weeks was a huge turning point for me.
When did you all start really exercising? I'm a runner, and would love to start that again, but am a little worried becuse I was on an antibiotic - Levaquin - that I had a bad reaction to, that says there is a risk of 'tendon rupture' for up to 2 months after you take it. I could swim, but my drain holes in my hips are a bit leaky, so I was figuring it might not be a good idea to go in a pool or the lake until theyare more closed up. What say you all? I walk every day, but am getting a bit bored with that.
Also, what exactly, does a seroma feel like? I have some tender areas on my hips, that might be filling with fluid, but I'm not sure. Is it quite obvious? I also have pockets of numbness around my hip incisions. I assume that's normal?
Thanks!
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I'm doing pretty good with stage 2, just trying to get my energy back right now!
My girls look AMAZING and I am indisbelief that these are MINE! My 3d nip tattoos complete the look and I find myself keep looking down all the time lol.
I got to pull 2 out of 3 drains really quick after I got home. I still have the third one in and am in my girdle
This drain is putting out way over 100 ccs a day- so much I dont even measure anymore, Once I see it's over 50 I just keep dumping it all day, At this rate I will have it for August too! ANyone else had drain issues?Also my belly button they created is freaking nasty. My DH keeps telling me it's forming a scar and to leave it alone. So I have been putting betadine in it and not bothering it but it's so yucky.
and i HATE this girdle. I feel so unbelievably constricted and gross in it. I only wore it for a week with my stage 1 and I am already at 10 days with it now. I don't know how anyone handles it for so long!!
Good luck to all of you there this week! I have a very good friend, Maddie, who is there right now for a serious infection after her stage 1. She is doing much better but they are keeping her the rest of this week. this is her THIRD trip there for stage 1. So if you see her send her some love from me!
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CanDsMom - is the swelling inside your incision? On your breast? or directly under your breast? is it tender or just puffy?
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Ok, so I'm back from a walk and this girdle is ready to make me cry! The part that is driving me INSANE is the thighs. I can't keep it from chafing and making it super uncomfortable to walk or do anything. The crotch on up doesn't bother me, just a bit uncomfortable. I'm at my wits ends here because it makes me NOT want to go for a walk or get up and do anything and I know that's super important to do.
Any suggestions!?!?
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