NOLA in September?
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Ro, why not stop in for a check with Jen if you're going to be there anyway? Axillary Web Syndrome with or without cording, and LE can occur after any surgical disruption to your axilla, or even just to your chest , and can occur even years down the road. I had no problem after BMX. and SNB's but then got all 3 after my exchange surgery from tissue expanders to implants many months later, a pretty simple, quick procedure. In this procedure they don't do anything to your axilla. (As my surgeon repeatedly reminded me. " Don't blame me, I didn't touch your axilla". Guess he was snoozing during the lecture on LE). I found it very difficult to find anyone who could recognize the AWS. I pretty much diagnosed it myself, but had three different docs and two LE therapists who were unfamiliar and didnt know how to treat it. Sheesh. Anyway, sounds like lots of other women have had similar feelings to yours that have resolved on their own. Most likely yours will too. With all the cutting and un-attaching and re-attaching and moving stuff around that we've all been through, it's no wonder we have strange and uncomfortable sensations.(But gorgeous soft, warm, jiggly breasts!). Even just lying on the table in the OR for hours can cause some of these tingles and tightness and numbness or pain. Hope we all get past this stuff soon!!! And get flat tummys before 6 months!!!!!!!
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djffro - So sorry to hear about your cousin. Was she active on this thread? If so, can you figure out what name she went by? I'm worrying about who it could be, and if some of us may have known her, too.
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djffro,
I am so sorry to hear about your cousin.
Please accept my sincere condolences
Like Eve I am wondering if she was someone we "knew" and spoke with via these forums.
Totally understand if you prefer to keep it private.
Gentle hugs
Marcia0 -
I'm sure some of you knew her, she was very active in the whole forum. Her name is Robyn from Ohio. here is her obituary site http://www.legacy.com/obituaries/dayton/obituary.aspx?n=robyn-c-clark&pid=152422391&fhid=63840
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djfrro, the link doesn't seem to work, but it's Robyn Clark? I hadn't heard from her for a few weeks...I am just stunned and in shock right now and don't know what else to say other than I am so very sorry. I came here to post about the Breastoration event, and I'll add it below, but this news just took away my excitement over finally being able to provide a link to buy tickets and join us in September. I'm so glad I had the opportunity to meet Robyn in person in NOLA. I'll send an email and hope that Jeff receives it.
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Tickets are now on sale for the "House of Pink" event on September 10, 2011, when the House of Blues goes pink for one night! This special event will benefit Breastoration, providing education about reconstruction options to women all over the US, and ancillary expense assistance for women seeking reconstruction in the greater New Orleans area. Breastoration was founded by breast cancer survivors!
You can purchase tickets here.
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NO NO NO, Not our Robyn??? BreastCancerDiva??? DJFroo, please say it isn't so. I noticed she had not updated her blog lately, and I had not seen her on FB in a while. I even went to her FB page to send love a few days ago.
The link does not work for me either.
I just found it. It was Robyn Clark, Breast Cancer Diva. I am so so sad, I loved her. We were in NOLA together, she was having Stage 1 when I had my Stage 2. Our husbands bonded. She was a light in this world. I cannot believe she is gone. My heart goes out to Jeff. I am sorry DJFroo, many of us knew her and loved her.
((( I HATE THIS. 0 -
I'm so shocked and so sad! I met Robyn in NOLA, too. The first time I saw her, she and her husband were sitting at the bar at Cafe Maspero, next to Nordy and her husband. We all talked and laughed that night and had a show-and-tell in the bathroom even. The guys moved to their own end of the table so the rest of us gals could talk about breasts and such. I also followed her on Facebook. She has been such a bright light for all of us. I'm so so sorry to hear this...
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I'm sorry to hear about Robyn too. I found that if you use the link and then click where it redirects you to the home page for the obits you can find Robyn's name on the list and click on that to read it. There is a mention of her NOLA Sisters in it
Again, so sorry....
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I don't know why the link is not working but I can see that you know who she is, Robyn Clark. I just talked to her a couple of weeks ago and she was still really optomistic. On Wed. she was sent home from the hospital around 3:00 PM after being told that there was nothing left that they could do and she passed at 4:00 PM. My whole family is very upset over it.
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Oh dear Lord i am reeling as well... Knew Robyn and followed her and "spoke" with her on many occasions...
Lost a FORCE sister 2 days ago and now our dear Robyn...
:::::((((. What a beautiful spirit she was...0 -
I am heartbroken. Pasting this in, below....
Robyn C. Clark | Visit Guest Book
News Death Notice
CLARK, Robyn C. age 54 of Beavercreek, passed away on Wednesday, July 6, 2011 after a fiercely courageous battle against breast cancer. She was an inspiration, comfort and strength to many afflicted with this disease. Robyn was preceded in death by her father, Floyd Freeman and brother, Dennis Freeman. She is survived by her husband of 20 years, Jeff Clark; mother, Anna Mae (Landrum) Freeman; sister and brother in-law, Michelle and Stuart Williams; nieces, Ashley and Melanie Neuner; father and mother-in-law, Marvin and Nancy Clark; sister and brother-in-law, Lori and James Dishman; nephews, Dillon and Devon Dishman; her favorite little girls, Keiaira and Ariana; her furry babies, Elvis, Priscilla, Rufus, and Samba; special friends Becky, Mary Kay and Lise; Noble Circle Sisters, NOLA Sisters; her friends in the chemo room, at Golden City Ballroom; at Lexis-Nexis and numerous other friends and family. Robyn was never happier than when she was dancing the Samba with her husband. She worked for Lexis-Nexis for 25 years where she was affectionately known as the Sales Meeting Diva. To read more about her love of life and her fight against cancer, please visit her blog athttp://breastcancerdiva.wordpress.com/. Funeral services will be held at 11:00 a.m. on Monday, July 11, 2011 at the TOBIAS FUNERAL HOME - BEAVERCREEK CHAPEL, 3970 Dayton-Xenia Rd. at Grange Hall Rd. with Rev. Bill Youngkin officiating with interment to follow in Byron Cemetery, Fairborn, Ohio. The family will receive friends at the funeral home on Sunday, July 10 from 3:00 p.m. - 7:00 p.m. In lieu of flowers, memorial contributions may be made to SICSA, 2600 Wilmington Pike, Dayton, Ohio 45419. Condolences may be sent to the family atwww.tobiasfuneralhome.com.
Published in Dayton Daily News on July 8, 2011
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Robyn was one of the wonderful group of women who shared their NOLA experience with me that weekend. She was such an inspiration through her recurrance and treatment. It just seems so unbelievable that cancer could take her. I hope I carry on with even a small piece of her grace, humor and love of life...
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I didn't know Robyn, but I read here posts here. I am so sad and my deepest condolences for my NOLA sisters who did know Robyn. She is the first person I have "known" to pass on during my brief BC journey.
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I am sad beyond words. When I went to NOLA for a consult I had lunch with Robyn along with several other lovely ladies, and it was obvious in just this brief meeting she was a beautiful person.
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I also did not know Robyn, but it's very sad to read about this...it seems clear she was an amazing person and it's just awful when this happens...there are no words...
djfrro - thinking of you and your family...my deepest condolences...
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That would be great, my name is Deborah Roberts. I hope it all goes well for both of us.
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I am so sorry to hear about Robyn too. I remember her well from when our paths crossed in Nola. It was wonderful hearing her talk about her ballroom dancing adventures with her husband, and a diva she was for sure.
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Laughlines, I saw you in the pic Eve posted on FB when a bunch of you ladies were together in NOLA!! Big smile, just like in your pic here!!
How do you all deal with this when a "sister" is lost? I will be three years out from my diagnosis TOMORROW (July 10) and I am still trying to figure this out. At first, I was mostly scared to death when we'd loose somebody. But then, I got really mad - In Feb 2009 I lost a local friend to BC, and that was really hard for me. I was livid, so pissed! She was a lovely person, and I could not believe she was gone. So mad, to the point that it was not good for me.
Lately, I have been trying to tollerate the losses, and co-exist with the fact that they happen. I can't accept it, so "accept" is not the right word. I think "tolerate" and "co-exist" are more descriptive of what I am aiming for now.
If anybody else has thoughts let me know. I guess it is a process we all will go through in our own way. I know this has nothing to do specifically with recon and NOLA... forgive the "off topic"!
Spring.
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I have thought for the most part that coming to these forums has been therapeutic and all good.. and the other night when I read about Robyn, I said to my husband that I had found the one down side of being in touch with others touched by BC... someone is bound to pass... and that is very sobering. Of course if we are posting, we are here, so it seems to not really affect us, until it does... You know what I mean?? You can kind of put it in the back of your mind thinking BC USED to kill people, but it won't get me, and then it gets someone, and makes you think... SUCKS.
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It is all very black and white for me. Either I avoid thinking about it completely or I am nearly paralyzed with anger and fear. It's not like I believe it can't touch me -- my mother died of bc when I was a young teenager. If thats not a convincing reality, I don't know what is. But I then spent 45 years trying to feel like bc was not a part of my life...until it was. That one mammo day of the year was the only time I let down my defenses. I always told my husband it was the worst day of my year. That, and caring for women sick with cancer or dying. I've always considered it a professional failure that I do this with such dread and emotional torment --- I am enormously respectful of the nurses and doctors who choose to specialize in oncologic nursing and medicine, and seem to do so with open hearts. Our board is so filled with love and caring and enthusiasm that I can totally forget that the common denominator is, after all, bc. I come here, every day, for support and feel happily nurtured and buoyed up by the spirit of all the women who post here. Safe in the friendships. Not vulnerable. But then a sister is lost and in the awful sadness, I am filled with rage and oh so terrified.
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Springtime - Maybe it's not really off-topic. In some ways it gets to the heart of the topic. Dealing with breast cancer. All the many aspects of it. And finding a way to live with it. Jerusha, BDavis - I agree, this thread is mostly so positive. It's a relief from so many other threads on bc.org. Positive news - taking our lives back. And so much support. Always. And now too, in a very bad time.
I lost a friend a number of years ago to ALS. He was only 39 and with very young children. I was privledged to be asked by him to help him write a memoir for his children - about his life up to that point, what he'd learned, things he wanted to say to them in the coming years when they would be growing up without him. It was heartbreaking to watch what the disease did to him and how it took him away piece by piece. But he showed so much strength, so much resolve to live as fully as he was able right up until the end. And he didn't waste much time on anger, even tho he had plenty of reason to be angry. He never asked "Why me?" But "Why not me?" He said the disease made him feel more a part of the "human condition." And he saw how lucky he had been in his life to have so much.
I think we all feel some of these things with this cancer business. The cliche of life becoming more and more precious and our finally being able to see, more than ever before, how beautiful and dear our friends and family and the world and life are. Anyway, I think experiencing the last couple of years of his life with him helped me, ironically, not to be as afraid of death as I was before. But I also shared in the horror of that particular disease and his total powerlessness in the face of it. Before the diagnosis, he and his wife were praying it was brain cancer - because at least there was a treatment for that and a way to fight. There is nothing - no way to fight ALS.
So we have a disease that gives us a fighting chance. And so many of us for support. And so many helping us in the fight. These are important things to focus on, and that make it more tolerable for me. I get mad too, tho, of course. I think of all the wonderful women that we would still have with us, if not for breast cancer. And I wonder why we don't have better treatment, tho there have been great advances.
I guess I'm rambling. It's late.
It makes me feel better to know that Robyn didn't seem to be spending a lot of her time being angry and shaking her fist at the sky - tho I'm sure she had her moments, just like my friend. She was having a heck of a time, if you read back thru her Facebook posts of the last few months. Almost every post, she closed off with "Life is beautiful." or "Life is good." I feel that way myself more often now than I ever did before cancer. And I hope that if that beast ever returns, I can live out whatever time I have left just like Robyn did.
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I cannot remember this thread ever being so quiet for so long. From several directions this week, I've been hit with the message that life here is precious and short, and that I really need to stop pushing myself so hard. I need to spend more quality time with my family. I called my kids and asked them to come home for dinner last night as a start, and that was sweet.
Betsy, I agree. Minnesota and I have discussed how in committing to working with breast cancer patients via Breastoration, staying active on these forums, etc. we are going to experience losses. However, we have both chosen to be involved despite the risk of pain because there is much work to be done to help others. We have no guarantees about today, or tomorrow. Life is fragile and can change in an instant. In the meantime, I will strive to express my gratitude for being here by trying to make a difference in the lives of others. It feels right to me, while for others, moving on and trying to forget cancer is best.
So, I talked to Alaina the other day and she had her scans---things are stable in her bones and her liver mets are smaller. She wanted a break from chemo, but her doctor isn't agreeable to that. It's been about 18 months of constant treatment and she is exhausted, but so happy to be stable on a chemo that is working. Please keep on praying for her---she appreciates it so much and credits it for why she is doing so well. I'm hoping she'll come to the Breastoration House of Pink event in September. I saw Stephanie (Macksix) tonight and she is considering going. Anyone else?
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Hi Sandy,
Thanks for the update on Alaina, I am glad to hear she is stable! I am still thinking about the Sept/Oct events in NOLA, and my vacation time, etc.
And yes, everyone is too quiet! I bet there are women out there with questions... you know who you are
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Sandy, I think the House of Pink sounds wonderful! I get really jaded about 'pinkwashing' but I know just what Breastoration is what a positive impact it can/will make for women. I hope the event is a success.
I've only been in chemo for less than 5 weeks and I'm so sick of it! I can't imagine how Alaina feels. Still being somewhat a newbie to BC, I still feel stunned when I hear about someone passing from the disease or finding out it has metasticized. I suspect I will continue to be stunned no matter how long I'm a survivor.
I watched the SCAR Project documentary on Style network this past weekend. It really moved me and reminded me how grateful I am to have started my surgical treatment in NOLA.
On a lighter note----I read this whole thread! Yes, the obsessive one I can be, I read this thread from the beginning. It took me a few months. I'm a bit burned out from reading so much about BC, but that's OK because I feel like I can coast for now.
I do have a question about nipples being made from areola skin. I couldn't do nipple sparing on my cancer side and opted to skip it on my non-cancer side. I skipped it because I've never liked my shy nipples and huge areolas. Well, Dr S spared a lot of my areola, which I'm really happy about now. I'm wondering if nipples are better made from areola skin (is there any difference/advantage to nipples being made from areola) and if the areola will still react to touch after a lift. It's on my list of questions for stage 2, but I'm wondering about any experiences here.
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I am 4 weeks out from DIEP today. I really felt like I would wake up this morning and feel a TON better. Not so. I still have a lot of chest pain (and tummy pain but not so bad) but I finally got my operative report yesterday and saw that they had to resect some ribs. I guess that explains the chest pain and makes total sense. I didn't realize that they do that. I am hoping that things start improving quickly now at this point though. I would love to sleep on my side but I think I'll wait until the chest pain subsides a bit. I can walk my dogs twice a day (1 mile each time) and drive and do a lot more than I could a few weeks ago - but some days I feel like I haven't progressed at all and I get pretty grumpy!
I do sleep in my bed now. I started this last weekend when my husband was home so that if I rolled on my side he could tell me. I bought a wedge pillow from Bed, Bath and Beyond and used 4 other pillows to make my 'nest' (head, each side, under knees) - it does work well. I think my recliner is still more comfortable but being in my bedroom is much preferred over the family room (with two teenaged kids coming home late at night) it is worth the trade-off. I'm sure it will just get more comfortable each night.
I do have some major grossness going in my belly button! I called NOLA on Thursday and sent a pic and they finally got back to me on Saturday and thought it was an infection so called in a prescription for antibiotics on Sunday and told me to start painting again with Bentadine. I had to start wearing a pad over the area too as it started to leak a little bit. Then yesterday the picture of the offending button I sent the previous Thurs was shown to Dr D who said no infection everything was great. I'm so confused. Is this normal? At this point do the belly buttons get downright gross and this is a sign of healing? Did anyone have to go to a local doctor to get stitches trimmed and get it 'fixed up'?
Cider - I have tried reading all of the back posts too - and got to about page 75. I need to keep reading. I have read a lot of your back posts as our DIEP journeys seem to be very similar (Bi-mastectomy with immediate DIEP). Thanks for writing all of those they have been helpful.
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DEBBY... less than a week for you... the 19th, right??
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Congrats, Laura! 4 weeks! Time does fly. One thing I learned is not to use dates or other people to gage my own progress. It only leads to frustration! I've frustrated myself plenty. I'm at 9 weeks now and I feel like I've been sleeping on my side for only 2 or 3 weeks. Give yourself a little more time for side sleeping. I still find myself using a small pillow against my back for comfort when I sleep on my sort-of side. It was nice to not need the nest of pillows anymore. I've been stretching out on my belly for short periods for maybe the past 2 weeks at my PT's nudging. My PT showed me how to work on releasing the belly scar tissue; it's far more aggressive that I would have guessed. What I would have thought of as massaging the scar was merely desensitizing the skin (which is important, too). Isn't the rib thing wild? I didn't understand, either. Maybe the docs don't go into it so we don't get scared? When I was explaining to my PT they cut the cartilage to get to the mammary vein she set me straight and said no, that's bone! That said, I rarely feel the sternum pain now. Only when I press on it! (so I don't press on it!)
The belly button. I was grossed out by mine but it did not ooze. I did keep using betadine on it for a long time; I think until the stitches came out. I can't remember when they came out when I gently tugged; maybe between 4-5 weeks? I'd try getting back to betadine 2x per day and see if that dries it up and continue 2x per day until the stitches are out. I did pick at the glue and did resist picking the stitches; the area was red/irritated from glue picking, which is why did the betadine. I was so relieved when a gentle tug released the stitches. I'm pleased with my belly button now.
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So happy to hear the belly button discussion. I now am free of surgical glue - except for my very inny belly button (it was always very inny so it's nice to see it's still the same!) I stick lots of betadine in there 2x a day but feel a bit nervouse about pulling the glue (and whatever else lurks in there) out. I was told I could start swimming 4 weeks post stage 2 - if I was all healed up - and with this belly button thing I don't feel confident saying I'm all healed.
My stomach is still quite swollen (looking about 5 months pg!) and I am will have to wear compression garments for at least 2 more weeks. Apparently all of he blood I lost during the surgery has pooled in my stomach. Need to call the radiologist today for another aspriation.
For those of you who had lipo - I seem to look the same as I did pre-surgery. I know they did the lipo since I have the holes to prove it. How long does it take to see the effects?
Cider - you read the whole thing? I've only made it to page 150. One of these days...
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cider: I had a lot of areola skin too, and my one finished nipple is mostly areola skin. I have found that it does pink up easily and gets slightly firmer than regular skin when I touch it. It also has more nerve endings, which for now means some strange pains, but in the long run I think they'll have more sensation than I expected.
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