Exchange City
Comments
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Speed o' light, I tell ya!
((((((LAURA))))))) I'm sure today will be a MUCH better day than one year ago for you. You are such a generous soul to us all - it feels especially poignant when you're in pain... Sounds like a lot of good ideas are out there - I'll throw out one more: I used to be a massage therapist and, ironically, worked on a few women post mastectomy to get range of motion, better sensation in the arm, etc... If you find the lymphedema therapists can't give you relief, I would suggest some deep tissue work on the back, upper back (especially upper back where the muscles may be pushing down on one of the nerves that gives feeling in the arm and hand), under the subscapularis, down the arm, etc. There may have been some trauma either in surgery or from holding yourself in a protective posture to avoid pain - that may have caused some "freezing" of the musculature and nerve impingement. Just an idea.... All I got. Except another hug!!! (((((LAURA)))))!!!
Wendy - I hope your return to work isn't too painful. You're a hoot to read - I think you have another career in standup.
Terri - I agree with Deborah - I absolutely see the Jane Seymour resemblance.
As for myself and surgical gear - I've always been the "good girl" removing every scrap of makeup just as I'm told. Maybe for my exchange I'll be a rebel and wear a bit of ....... MASCARA! Naughty, naughty! Actually, what I really want to do is leave my nose ring in - but I'll never get away with THAT one! My best friend is going to have his regular assignment of having to get that thing back in my nose when I wake up. Now THAT'S a good friend!!!!
Peace to all of you,
Geena
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(((Laura))) I'm so sorry. In the business where we use our hands all the time, it really sucks.
I have had numbness and tingling for over a year, on the side where they took everything out. I accept it as a new normal, but it is very annoying, even painful at times. I have no swelling either, and the docs say it is the nerves regenerating (if they ever will)...Just to know you are not alone. And it is interesting(?) to know we both had radiation on that side. I'm with ya sista..in every way. JUDY
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WOW ladies... it seems A LOT of us have this tingling...numbness and pain... WOW..... Deborah.. thanks for the article... I am going to call my Oncologist and see who I should see about this. He did, at one point, recommend I see a neurologist. I need to take care if this..
PLEASE don't yell at me after I say this...
OK.... The only reason I have not already started taking care of this is.... I have no time. I have grandkids m-w until 5pm... then I work th-s from 9-8 or 9-4... and Sunday is my only day ...OHHHHHHHHHHHHHH... I need to make time to fix things I know...
Thank you for all this information ladies. I am writing it all down. What Wendy and Geena are saying.. is what the Study says that Deborah sent me...
I will look into this...
Thank you very much for the support..
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Laura ~ One step at a time. Just pick up the phone and make the call to the Dr. then take it from there. You have to take care of yourself ~ no one can do it for you (although we would make it go away if we could)!!
Have been hoping for some tingling in my arm since there it would indicate nerves coming back (hopefully) in the area that feels dead. Nothing so far. Now I am not sure that I want it to come back if it won't stop.
Was incredibly uncomfortable and miserable yesterday thinking that my whole upper body was swelling. Come to find out I was wearing the wrong size bra. Realized it this morning. I should have been a rocket scientist . . . .
Take care,
Colleen
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Laura, sigh, is there an end in sight? God bless you, you are very stoic. I knew you were having some issues, but not to the magnitude that you wrote about. Prayers to you sister. You are the the cheerleader of positive thinking and all the time having issues that needed attention. God bless and know that I am praying for you that you will get answers and relief.
Today, one year ago, I was in the OR, losing my breast, this year I am in a much better place. The anniversary dates are never forgotten.
"Sisters" I have enjoyed reading your posts, Baxter cracked me up and the whole tragedy of BC has been mitigated by the coming together of experiences that make this whole ordeal a little easier to deal with. Thanks to our "Breast Whisperer" who is a wealth of information on TE's and implants.
Jan
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Tingling? I've had what feels like needle pricks all over whenever my skin gets warm. My oncologist said that was nerves regenerating too.
When you were diagnosed, did people come out of the woodwork saying, "I know so-and-so who had breast cancer 20 years ago and she's doing fine. She never even thinks about it anymore." What others don't realize is that we just don't mention all of the side effects that come with our "new normal". Heck, it seems that our doctors don't even acknowledge half of what we go through!
Hopefully for each of us, what's troublesome now becomes a distant memory by the time we ring in 2011. We're getting stronger one day at a time.
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I have pain under my right arm and in my right breast (which is weird since I don't actually have a real breast) whenever I over-exert or do too much. I also get swelling on the right side. I've been reading the lymphedema board and decided I might have "truncal lymphedema." It is really uncomfortable to me to wear a bra, about all I can wear is a camisole. Even with just a cami, I have to take it off at the end of the day after work. My right side had major healing issues, and needed additional surgery to remove necrotic tissue after my mastectomy/reconstruction. Now I wonder if it is lymphedema or nerve damage or what?
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JAN... ME to sweety... Today , a year ago... I was loosing both breasts....~sigh~ We are " Mast sisters".... HUGS!!
Texas... ain't that the truth...
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Laura/Colleen, I agree with the massage idea. I started self massage right away because I wanted the numbness to go away and continue to help with the tingling. I think it's made a big difference to me.
Sorta similar, does anybody else have phantom nipples? Every now and then I swear I feel my nipples tingle, sort of like when your just starting to breast feed. Makes me chuckle but also makes me kinda sad.
Julie
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Laura,
I also have numbness and tingling down my left arm. I had 9 lymph nodes removed from that side. But I also have brachial plexopathy on that side for the past 7 years. (2 nerves in that arm are affected) I take Neurontin for the plexopathy. However after the surgery the pain and tingling returned. I increased my Neurontin (neurologist lets me adjust somewhat myself due to being an RN and having this for so long). But I got no relief. I then thought the TE moved laterally so maybe from the swelling. So far almost 3 weeks from exchange and still no relief. I will make appt with neurologist and then with lymphedema center in my town. PS was aware of my nerve prob in that arm and said he wouldn't leave that arm extended too long. I also see no swelling in the arm or underarm but it may only take a little to affect the brachial plexus which runs under the arm pit.
Deborah,
Can you send my the article also? I want to see before seeing neurologist and lymphedema center.
Anyone else,
Almost 3 weeks post exchange and last night told did not have to wear sports bra to bed and to wear regular bra to work. Today in work I had some major pain when bending down and yawning. Pain in the upper pole on 1 side. When not bending or yawning (didn't sleep well) just a mild discomfort. Just saw PS yesterday and all was ok no restrictions. So now I just put sports bra back on to see if this helps and I will sleep with it on tonight. Any suggestions?
Janet
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I'm back from the frigid and SNOWY Midwest! Wouldn't you know, though.....it's snowing HERE! Sadly, nobody knows how to drive in it...... We enjoyed a beautiful Christmas with my family, but I'm really glad to be back to my computer and to all of you! I honestly did read through the eight or so pages that I missed.....lots going on, of course......Welcome to our new sisters, and I'm so glad to hear the surgeries went well....
Funny....my foobs continue to change.....it took 12 weeks for any change, then for the past two weeks, almost different every day! Now they're soft enough that they actually can "squish" a bit.....Just a thought, but I wonder if those of us who had the short height TEs just take longer to "drop and fluff?" (Deborah?) I was originally worried that my cleavage was too wide - ps said he went as medial as he could with my musculature - but I think once the left side is moved where it should be, I'll be quite happy with things. (dh is already happy...lol) Yippee!!
My sis and I went to a fru-fru bra shop while we were home.....quite an experience! I spent way too much, (yes, guilty again, Deborah!) but did come home with three lovely and supportive bras - 30E!!!!!
(((((Laura))))) I'm praying for you today on your mast anniversary....mine's in less than a month......remember how KEW celebrated her day? We CAN turn it into a positive day!
Wishing you a safe trip and a beautiful result tomorrow, Dani!!!!
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(((Jan))) and (((laura)))
I also get phantom nipple sensations. It is the weirdest thing. If I go into a very cold room, I swear I feel my nipples getting erect from the cold. I can actually feel that sensation. I even sometimes cross my arms in front of me or whatever, for the sake of "modesty." Then I remember that I don't have nipples and it's all in my head and it just freaks me out all the time.
(Well, I do have nipples now, since 2 weeks ago, but you all know what I mean....)
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How did KEW celebrate her mast day? Mine is in March and I'm sort of dreading it already.
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Janet - I had definite pain for several weeks, though I had a lot of pocket work done. I'm still uncomfortable without a bra - though my ps still has me on 24/7 bra wear - so it's pretty much just after my showers that I feel that..... Some support might help.....just a thought.....
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lifegoeson - KEW did the greatest thing - at least I thought so......if I'm remembering correctly, she brought cupcakes to her doctor's office, and then she sent flowers to the person in the same room she had been in for her mast......A beautiful way to bring a horrible situation full circle.....I plan to do something similar.....KEW - I hope you don't mind being copied!!0
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val- that is a GREAT idea....I was wondering what to do too. Mine is Feb 13. I have one favorite nurse from that night. I will have to tell her so. Also my doc. I am dreading it too but have come so far. This Christmas has been hard, as last Christmas I wasn't yet diagnosed. Very different life now!!!
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Wow ladies - You are an inspiration. One year ago this month I had my PBM and there was a particular nurse that I really appreciated. She was there for me the night of my surgery and the next two nights after that. Fast forward one year and I am working part time at that hospital, so I just sent an email to a RN w/ the same first name to see whether she was the nurse that meant so much to me at such a difficult time in my life. I honestly don't think I would have thought of it if you hadn't mentioned doing something on your anniversary. You all are great! May you all have the best New Year possible!!! - Jean
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Unfortunately I can't remember any nurses names or room numbers from the BMX or previous lumpectomies. Chemo brain.
Have however been taking treats to my PS and his staff with every visit (fills and pre-op). Keep mixing it up for them, cinnamon buns, pastries, homemade Christmas cookies, breast cancer pink white chocolate dipped strawberries, etc. Want to take care of the people that are controlling the outcome of these foobs, that is for sure! So far, so good. Maybe next appt will be a cheesecake. They are all the best!!
Keep referring to this year as the Year of the Breast and am looking forward to getting nipples and appearing normal. All of the other SE's have me perplexed since they seem to come and go and change. Don't plan on celebrating the end of those for some time, although would love to be pleasantly surprised if they went away.
On the other hand I am truly thankful every day that I have aches to complain about. Feel as if this "brush with death" has greatly improved my true appreciation for family, friends and all aspects of my wonderful life.
xo Colleen
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Val--not at all--I'm glad you think what I did was a good thing, but I also, had a facial, massage, mani/pedi. It was a great day in the sense that I gave something to those who I believe saved my life and gave me new girls, hopefully gave some love to another in the same room, and then allowed my mind and body to be pampered, to have something pleasant done to it on the anniversary. Remember though I was really struggling as the anniversary approached, as I wrote before I think the grief is part of the healing, a very difficult part of it, but I think when we can grieve, and begin to take steps past it is when we allow healing into our lives.
Sorry I haven't been writing more, it was hard being alone for Christmas--and tried to keep my gloom to myself, but my kiddo came home today and I'm feeling happier.
Hugs--Karen
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Karen,
That really is a lovely thing to do - both the pampering yourself and the paying it forward part. I was thinking that I will probably have to take that day off from work because I will probably be on the verge of tears all day. I expect it will get easier with time.
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Kew,
I think the way you honored your anniversary is very impressive. I never would have thought to visit that room again or the nurses with the shaking hands. I just remember that day as being so dark, in every sense. I think it is wonderful that you were able to put your emotions aside and express gratitude to others and hope for the person starting this journey. The pampering was well earned!
I am so sorry that you had a difficult Christmas. It can be a wonderful time or bring out such feelings of sadness. I am glad you have company now.
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Karen,
Wise words from you as always. The grieving is part of the process. We must allow our tears. I told that to myself today when I got some more weird body news. I felt myself holding in the tears and realized, "No, let it go" and I did, it felt better. Also, no need to keep the gloom to yourself here. There are a number of single gals here and the holidays are challenging sometimes. Glad your kiddo is bringing some light into your life. You deserve that!!!
I've been sitting in my work clothes with my robe thrown over it all -- too cold here in the Northeast to disrobe and get into comfie things. But I don't want to spend my evening in work wear -- time to take a deep breath in - grin, bear it and CHANGE!
Geena
Geena
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Laura,
Read your post and just had to respond. I'm SO sorry that you are in pain. Pain sucks! I had my bi-mx in April and have been in pain ever since. Deep, excrutiating pain in my armpit area, along the underside of my arm. I've had multiple surgeries, c-sections, etc., and always thought I handled pain well, this was so different, and took months to feel even a little bit better. I've brought it up numerous times to every one of my docs and they always just stared at me.... "Hmmmm, that's odd". I went back to my bs a couple months ago asking for him to write an order for pt and he just gave me the same stupid look and said, "Hmm, you don't have lymphedema, you really don't need it".
Anyway, I've learned to deal with it by taking pain pills perscribed by my ps for the TE pain. Just had my exchange on the 14th and at first, the first couple days, piece of cake, and the last four, five days, not so good, more pain. Yesterday I called a treatment center in Mpls specializing in bc, and lymphedema. Like you, all my docs said I don't have lymphedema b'cuz there's no swelling. The woman I spoke to asked me if I've ever heard of Axillary Web Syndrome, or Cording, and I told her yes, not from my onc but from the bcorg website. I googled it, and found this website...
http://stepup-speakout.orgCording_and_Axillary_Web_Syndrome.htm. There is SO much information on that site! The second I pulled up the page I knew immediately this is what I've been struggling with. I almost cried I was so emotional....to put a name and picture to what I've been dealing with. It made me crazy to hear about a friend of a friend who went golfing two weeks after her mx! I thought, "Wow am I ever a wimp!" I couldn't even go to work for at least six weeks and even then I was still in so much pain in my little percocet fog
. After that call with the lady from the lymphedema center, I called my onc's nurse. I explained to her about the cording (actually called her for something else), and she kept saying, "Hmm, we've never heard of that", like I don't know how many times. I finally said, "Just because you've never heard of it, does that mean it doesn't exist???". I tried calmly to give her the website address so she could look it up, and maybe learn about this, and then she said, "Oooooooooh, you really have to be careful what you read on the internet". I told her I just got off the phone with the Piper Breast Center... ever heard of them?? She said again, "Well the doctor and I have never heard of this". I'm not sure how common this is.... I was just shocked that my onc who talks about all of these conferences she attends, up on the latest and greatest has never heard of this! The conversation got worse from there I couldn't believe some of the stuff she said to me, needless to say, I'm changing oncologists.
They say you need to be your own best advocate. No kidding! Sorry everyone I'm just kind of angry that I haven't been heard for so long, and have walked into every appt, smiling, happy, cracking jokes, now I'm p-ssed off! And so sick of being in pain. Being single, and not knowing anyone who's had bc at my dx, I was pretty ingnorant for a long time... until I found this site in Sept. I don't know what I'd do without all of you, you all truly are so amazing and have literally been a lifeline to me.
I had 20 + lymph nodes removed (most on right tumor side), and a 10+ cm tumor. I don't want to assume that is what you are dealing with Laura, just throwing this out there for you as a thought. I have a ton of scar tissue from breast reduction years ago, mx, exchange which is not helping at all. I went today to my primary who wrote an order for pt... I start in two weeks, hopefully it will help
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Diane! You are getting a standing ovation from me!!!! Sorry about your pain but also so happy for you that you stuck up for yourself. I think this helps us heal. Blessings to you.
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Life-Geena--Dani--Thanks for your kind words.
Good luck tomorrow, Dani.
Geena--I'm sorry that you've had such a rough road, I really with all my heart look forward to your surgeries and healing being completed. I just got a little dark this past week, missed my kid, and trapped at work because of money and insurance, I want to try and stick it out until June, and then piece together a couple of part time jobs for my last two years of school. I have to begin practicum next fall, two days a week and classes at night. It sounds crazy busy, but I can't wait to be more focused on school and out of a position that doesn't feel healthy for me any longer.
I'm on vacation and work has called me 3 times and I've had at least 9 urgent emails, and it is Tuesday :-(. Lucas keeps telling my my work is cancer and I need to cut it out of my life. He doesn't get things like INSURANCE. Something good will happen. I've been applying at some of the local hospitals and a natural foods store chain called New Seasons. I'll piece something together, just have to hang tight in my job until June.
Diane--Cording did a number on both sides, but especially my left/cancer side, I was in pain from my wrist up within days of surgery. The PT worked with me and it really helped, but if I don't use my arms it starts up again, and I also have it sometimes down my ribs. One thing I noticed is that I can know feel when I shave under my left arm. I couldn't until a few weeks ago, but didn't even realize it until suddenly there was feeling. Strange.
We had snow this afternoon, it was beautiful, while Lucas and I finally were able to celebrate Christmas, snow was coming down. Our lab, who was born last January, has never seen snow, she went crazy jumping up into the air trying to eat them, running around, it was adorable.
Couldn't have done this year without all of you amazing women.
Hugs--Karen
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Hi to all EC posters! Wow reading through the posts I realize that, you know other than that little CANCER diagnosis at the beginning of 2009, I have been very lucky with infections (or lack thereof) and surgery probs. You all have my utmost respect for all that you have or are enduring. Please God let 2010 see us all move forward from the torture of treatments and surgeries. I wanted to ask about the anniversaries. I had my first, and unfortunately, diagnostic mammo January 18, 2009 and that is what got this BC ball rolling for me. I had found the lump a few days before and have a wonderful PCP that did not dismiss it as caffeine because I was 36. Anyway I did chemo first and started that Feb 18, 2009. This helped me to avoid the "surgery hair" that some of you have experienced because I went into my BMX bald, bald, bald..lol. I had my BMX June 30, 2009. No rads so luckily no anniversary there. Had my TE/Implant exchange December 11, 2009. And oh yea somewhere during that time my BS told me that I had IDC in both breasts. Funny I can not remember the exact date of either of those discussions. Which is my cancerversary? It is funny (or is it ironic?) that so many of you discussed the depression that you feel at the year because I am almost there and have really been feeling blue recently when all is going good otherwise. Does this stuff ever get better? In a way I feel like it is because it is like running a race mostly uphill during your treatments and then....it slows down. Not doing great with the slowing down yet. I think after reading the posts I will relax and enjoy the slower pace because some of you are truly still sprinting and I am sorry to hear it.
I also wanted to ask about nipple recon. Do those that have had it feel that it is really worth doing? I am giving myself time away from surgeries so I am not making the decision yet but do they look real and are they always erect? I am leaning towards getting them but I guess I can't get my mind around how they are going to look.
I am sorry to all that were missing someone that they love or that they haven't even met yet (an SO!!!!) this holiday season. I can relate a little because even though I have an amazing DH, BFF, and family, BC took away my ability to have children biologically and I found myself getting really emotional this Christmas when my BFF mentioned that she ran into an old friend of ours and she was about 5 months preggers. Like I said maybe the slow down is getting to me now. I have time to reflect now and I am not really liking it
Anyway, I wanted to give support to so many posters but after I read them all I forgot most of what I wanted to say...chemo or Femara brain? I did want to say that I had an allergic reaction to Compazine after my first chemo, called a dystonic reaction, and this makes your muscles spasm uncontrollably. It happened in my neck and by the time I finally went to the er I had been doing the "funky chicken" for about an hour. My DH was playing Pinehurst so we had pre arranged that I would stay with my BFF. She said she was going to put food on the floor to see if I would peck at it like a real chicken....LOL. How embarrasing it really looked like I was doing the funky chicken and I had no control over it. This is a reaction that one should never have to find out that they have! Anyway good luck to all who are having reactions or rashes. I can relate. Happy, Happy New Year to all. May all your dreams (or just one big one!) come true in 2010.
Edited to add that I had no idea this was soooo long...sorry!!!
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Cheri thank you
, it feels so good to be validated on here. I know that everyone is different, different dx, different everything, but we know our own bodies, and it makes you crazy when three doctors tell you you shouldn't be in pain....like it's all in your head.Karen - how crappy that even on vacation you're not really on vacation? Working full time, single mom, and now bc...it's like three full time jobs!
Hope all of you have a Happy, Happy New Year! I'm praying for a cure for this beast and that each of you have a wonderful 2010.
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OMGosh... Di and Ty.. and sooooooo many of us HAVE THIS... Di... I am too tired tonight... but I will PM you... WOW... after posting my issue.. and ALL YOU LADIES writing back.. saying you are the same... I am just tearing now... it is TOO much...
I had a great day on my anniversary of mast.... and.. I had no sadness about it at all today...
Jan.. HOW ARE you dealing with today... I prayed for you...
Goodnight sweet sisters.... You are ALL wonderful..
DEAR DANI... I pray for you and your surgery tomorrow... Keep us informed..
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nene2059 ~
God bless you!!!! Considering what you have gone through & to what WE have ALL gone through this year...may we ring in a brighter & better New Year!!!
Continued thoughts & prayers...especially to Dani!
NAE
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Diane! You ROCK! I am so glad that you are changing oncologists. The reaction that they gave you was so inappropriate. Kind of like the unfaithful partner, making you think that you imagine things when you know something is not right. I am glad that you are dumping this unfaithful partner in your care. I must admit. I have never gone back to my onc. She wouldn't answer my questions about the medications, (aromitase inhibitors) risk vs. benefits. The onc. basically told me to choose what I wanted to do for tx. I thought that was supposed to be her area to advise me on. I don't know if I should follow up with an onc. at this point.
Geena and Karen, You two are such an inspiration here. Your honesty about your situation, progress, ups and downs are helpful to remind me that when I struggle, that this is NORMAL. You may be alone, but you make the BC world less lonely by reaching out. You both are a wealth of information and reassurance and a great comfort to all of the "sisters" that jump in here for the ride.
Hugs. Jan
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