Calling all TNs
Comments
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I'm sorry to hear of this loss... I have no other words...
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HeidiToo: I am so sorry to hear about your friend and I am so sorry for your loss. Cancer sucks.
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oh, i hate this thing...im so sorry for you loss and her family...stories like this really bring it home..Just the other night my DH and i were taking about how this all seem like a dream for us...We know that its there but it doesn't seem real because we can't see it and it seems so small...we know it real, but we keep wondering how something like this can be so detrimental...i keep getting emotional about all this..does chemo make you more emotional...i have to be strong around my family, because i don't want them to be even more stressed than they already are so im venting to you ladies...sorry to ramble...I brought up living will the other night and my DH wouldn't even discuss it, how long should we wait...unfortunately we don't know how the chemo is working so could it be spreading as i sit here....gosh its just so stressful...im scared today....i keep wondering if i should have had surgery first instead of chemo first...wonder which is the most effective...does anyone else have day to day doubts about the decisions they made? I trust in my dr.s,but i really am worrying today...How do you all deal with the finincal side of this...it seems there is always copays and prescriptions and ive just started...i can't imagine how its going to be as i get farther into treatment...
sorry to go on and on, but ive found that this is the best place to vent...thanks....
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Sorry for your loss Heidi, this will be a sad day.
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To all my sisters -
Caryn Rose's passing has impacted all of us. For those of us that had corresponded with her along our journey, and for those that are only learning about her now, it is a huge loss. But she would surely want us to remain strong.
Heidi, I wish I could be there right now, next to you, to put my arms around you, as I know this has touched you in a very personal way. I totally understand and can well feel all the emotions that you are going through. When a sister passes that we feel a more personal tie to, it can be devastating, a kick in the stomach that causes us to feel great pain. Whether we personally knew her or not, if we bond with a sister through shared diagnose, treatment, correspondence - whatever - that bond is there - solid and sure. You are strong Heidi - grieve, as we all will do for Caryn Rose, but also kick the fear to the curb as soon as you can. There are many triple negs that are living cancer-free lives - we can too.
We are all in this together - and I am so grateful for this fact everyday. Who but another one of us could every truly understand what we feel upon the loss of another breast cancer patient.
I am so tired of trying to share my feelings about the loss of someone I "only knew through a cancer forum" (as my sister likes to remind me), and if I stayed off the boards, I wouldn't be so "morbid" - then the roll of eyes. Oh, how little those that truly love us really know.......
As we get ready to ring in a New Year - I will toast to Caryn Rose's life - and all she has taught us about being our own best advocate - and to each of you - may 2011 be a wonderful year - but more importantly - a healthy one.
Linda
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Dear Heidi,
So sorry to hear about your friend, Caryn Rose. I will keep her and her family in my prayers.
This board is so important to me, even tho I am just starting this TN journey. Thank-you.
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I am also very sorry to hear about Caryn Rose. I never communicated with her, but had been following her husband's updates on TNBC Foundation boards. She was a warrior to the end and I hope is now free and at peace. I have her and her family - esp. husband Steve - in my thoughts.
TifJ and Lovelyface: Thanks for the pharma-help advice. I took half a Valium last night and had some rest. I had not so great news yesterday. My path report states they found DCIS in the same breast and an inadequate margin of it in the re-excised cavity. They also found ITC in the one node they took but tell me they don't know what this means, so they "call" it node negative. I'm beginning to feel like I'm not gonna win this thing. So far I've had two surgeries in two months andI just keep getting bad news. I told DH today maybe I should just face up to the fact that I'm running an uphill battle and let nature take its course. This makes me sad but I can't face another surgery. You ladies are very brave and I know I'm not the only one. I just wonder what kind of quality of life I'm going to have if I'm constantly healing from surgery and on chemo for the next 2 years only to have it come back anyway. Maybe I should just take my kids on a couple of vacations and get my things in order.
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Keep fighting! It's too early to throw in the towel.
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don't give up Michelle, we know it's hard and sometimes very disheartening, but you can do it and we are here to help you every step of the way.
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((((Michelle)))): It is always disheartening when given bad news, but a year ago October my Dr. told me I would surely die if I didn't do what he told me to and here I am. It is a battle but you are far from being to the point of being done. You have to take a deep breath and realize that this may be a long battle but there is quality of life afterwards and healing may take awhile. If you aren't happy with your doctors, please get a second or third opinion. Please don't give up! We are all here for you!
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Michelle: Please try to give yourself a break. Your world has been turned upside down, and from what I can tell, this all just really transpired about a month ago! In one month, you've had so much news and had to undergo surgery... so many decisions and so much to take in, especially around holidays. I remember when I got the news back in September and I remember far too well feeling like I couldn't take one more call, feeling like I wasn't or couldn't make it through. But with the support of my family, the wonderful understanding women I found here, and the prayers of so many people, I am still plugging away.. halfway done with chemo.. looking forward to the last of surgeries in February. It's anything but easy. I've cried, slapped myself around, given myself pep talks, and cried more. Please know what you're feeling is completely normal. I've felt the despair and fear as well as so many other feelings I can't even describe. There IS light at the end of the tunnel. Sometimes you can't see it, and that's when you need to come here and let us help you through it with our own experiences, suggestions, hugs, and thoughts. Right now, it just sucks.
My advice... allow yourself time to heal mentally as well as physically. Take lots of deep breaths. Eat well and get rest because it's harder to handle things when you don't. Know that you're stronger than you think... I know, because I didn't think I could do this either and I have. Get second and even third opinions on what is going on. Ask questions, make a list, take a recorder, and never feel that anything you ask is stupid. Don't go by statistics because you are NOT one. If someone offers you help, take it. Triple negative has been given a bad name, but don't forget that this cancer responds to chemo well.. often giving people a complete pathological response. Also don't forget that after 3 years, our curve starts falling dramatically and from what I understand it dips below the curve for hormone positive people after that.
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cc4npg: well said!
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Teka:
I think we all live in that same small town! Seems your post could have been written by probably all of us! Very first thing my onc asked upon seeing me as she swept into the examining room I was waiting in at my last recent "3 month" was - "Are you still on those boards???? I sure hope not"! Do they all honestly believe that we would have no fear or trepidation regarding our diagnoses - feel no aches or pains and have to wonder - and just go about our daily lives as if we were never burdened with this beast - if only we stayed off breast cancer forums? Yikes, I think I'd be totally bonkers by now without this forum and the TNBC foundation forum, for sure!
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Michelle:
You've been through a lot in a short time, and of course, most of it seem nothing but discouraging. We have all been there. I had to have a re-exicision, after having had a huge lumpectomy that ran from the middle of one side of my breast to and up and over the nipple and down and across the other side of the breast to the sternum - all that to get to a 1.2 IDC nodule located 5 cms. beneath my nipple. Then when path came in - had to have all this reopened two weeks later to get DCIS out of two margins. Was told if they didn't get it - would need breast removed, which I wanted originally, but BS said it was overkill. Yeah, right. Started my chemo 3 weeks later after BS, Gyno, Vascular Surgeon and Onc all cleared me for it - only to get febrile neutropenia and cellulitis in the bad breast right after my first chemo. Was hospitalized for 6 days on iv antibiotics in complete isolation and was sick as a dog. Chemo was delayed another two weeks - and from there - I swear - it only got worse! Depressed, down, you name it, I felt it - just wanted to throw the towel in. With all the support and love I had, I had to pick myself up and perservered to the end, and sure am glad I did.
Don't mean to scare you with my horror story, just want to pump you up - and let you know - it's always darkest before the dawn. It will get better. It's all new and swirling around you right now so fast your feeling dizzy. Take one step at a time, one day at a time - it will all begin to fall into place. Being overwhelmed with one body shot after another is never easy to handle.
Chin up and put on those boxing gloves - you have a whole audience here cheering you on - every step of the way.
Hugs,
Linda
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CarynRose was the 1st tnbc sister to reach out to me at my dx 2 yrs ago... She gave me such hope that everything would be OK. I just feel so *hopeless* today. If it got her, who's next??
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Michelle67- ONE DAY AT A TIME!
Breathe
REPEAT: ONE DAY AT A TIME
Breathe
Before you know it your gyroscope will be back online and you will be able to right yourself to where you can get through a day without fear. We have all been where you are: facing our mortality and wondering how much of it is left. It's a process, and it *will* get better. I ordered a ring online that actually said "One day at a time" I wore it all through treatment to remind me that that was what I had to do: take one day at a time.
Before I knew it, I began to feel less threatened and more positive that I might survive this damn disease. Setbacks like losing a fellow TNBC sister rattle me a bit (and my husband--- he cried when I told him about Caryn because he so fears the same for me) but then we soldier on. Of course, today I had the additional blow of learning a fellow carriage driver has just been diagnosed with BC, so it's a double whammy. I don't know the details yet but she's having an MRI today.
Linda- I cried when I read your post. It is so true what you said about the online friends part. Staying in touch with others similarly afflicted via an online forum helps me to stay grounded. I am afraid to feel like a survivor, because the entire subject has felt like an out-of-body experience; like it's not real. Being in here reminds me that it is, and thus, protects me from complacency. It keeps me "battle ready", because I *never* want to be broad-sided by BC again. Never!
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MicheleS- THAT is the $64,000 question.
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Teka:
No, I do not talk off-line about bc sisters, unless it was about a recent death that had deeply hurt me, and then only when my sister has asked me "why I sound so down." Why would I speak of anyone's situation or posts here on this forum to anyone that can't even begin to understand why I am here to begin with?
Edited to add: I am not "policed" by my family, however, they all seem to agree that my life would be "better" if I did not spend my time relating to anything cancer. As many non-diagnosed loved ones feel, once you have completed all of your treatments, and all appears to be well - you therefor are "well." I only wish it were that easy.
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Heidi -
Didn't want to make you cry! Just wanted to let you know I was feeling for you and wished I could have been there physically for you! That's what makes this forum so great - we always have someone on board to reach out for us when we hit a bump - and Caryn's death is a real nasty one.
Hugs,
Linda
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thanks Heidi for your reminders to breathe... one day at a time.....breathe
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Hugs to you Michelle and the rest of you wonderful ladies...sometimes it gets so freaking hard doesn't it...I've been feeling a little down myself (and that is just not me)....too much bad news..it hits so hard when a TN sister dies...you think that you are next....
I don't know..I love these boards and I love talking to all of you...but sometimes I wonder if it would be best to go away for a while...but would this take my fears away? Probably not...
My family doesn't like me coming on here...my SIL who went through cancer does not come on here....I just don't think that I could NOT come on here...
I want to know your results Kelben! I like hearing from everyone about their ups and downs and about having accidents in Target..you guys are a part of me...I think about all of you so much..
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I don't know what I would do without all of you. Go crazy I guess! Thank you all for being here and a very Happy New Year!
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MBJ - I feel the same way!
I too want to wish everyone all the best in the coming New Year. My wish is that all of us will enjoy good health, uneventful and successful outcomes for those going through treatments, serenity and peace of mind for all of us and the stamina to keep on keeping on. May blessings be bestowed upon each and every one of us and our loved ones.
Linda
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I have mixed feelings about these forums. Having been in other forums for other non BC subjects my experience is that, when you are ready to leave, you will. That's what I did.
When I was in Maine for a month this past summer I didn't post much (maybe not at all, if I recall correctly). But then, I got home and fell right back into it.
If the forums upset you, or keep you "worked up" about your diagnosis then I would agree that it might be best to leave.
However, I believe that there are many of us in here (particularly on this thread) who stay here for the pure camaraderie of it. Not to dwell on our disease, but to move beyond it while still giving back to the "newbies" that rely on us for comfort and guidance.
I see nothing wrong with that. Different strokes for different folks, IMO. In the *very* beginning I think my husband felt I spent a bit too much time in here (and TNBCfoundation.org). However, he soon came to realize that, handled correctly, these forums can be a source of comfort and inspiration.
To those who see it otherwise--- they are entitled to their opinions--- however wrong they may be!
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Well said Linda...I echo your wishes for all of us in the New Year! I personally like to check in to see how everyone's doing.
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MJB..I think we are already a little crazy!
And Thanks Linda..I liked your post...I do feel blessed!
Heidi..agree with you too...
Oh by the way...Connecticut girls basketball team just lost to Stanford girls tonight..first lost in about a million years....
see how diverse this thread is??
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HeidiToo...
Thank for pointing out the fact that us "newbies"really need all of you!
Michelle...
please go easy on yourself and don't give up! I just visited with a woman today at the Cancer Resource Center and when she was diagnosed she was given 5 years...she is now ready to celebrate 19 years of NED! Wow! Keep fighting!
This forum is so comforting to me...I just had my first chemo today at 9am (T/C)/ I got out of there about 1:30pm. I took a friend with me and she was such a help...always made sure my tootsies and fingers were "frozen." My husband brought my 11 yr old daughter to visit for a minute, hopefully that will help aleviate any fears about chemo she might have. I feel great other than feeling a bit sleepy. The fam is watching basketball in the other room while I sit in the living room with a dog and cat curled up next to me! Gotta love that unconditional critter love !
I did use the frozen peas...hope it helps. I also put them on for a few hours when I got home. I'll keep you updated. Oh, I also used hard as nails...
I made some amazing knorr spinach dip for tomorrow night! A few families are bringing over enchilladas and we will all sit around and welcome in the New Year together! Just playing it by ear!
Happy New Year to all of you and thanks again for all the great answers to all my crazy questions!
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Hi Michelle
I agree with cc4npg and MBJ. Please don't give up yet. This is a long battle and life is a blessing, so we gotta fight this beast and get past the 3 years and get on the safe side. I also had IDC and DCIS in the same breast and had 2 lumpectomies, with one infection surgery. I also have issues in my right breast, for which I just found out I will have another surgery. This is a long battle, but I am facing it right in its face. I have yet to have a BRCA test if my insurance approves it, and that may change my whole prognosis, keeping my fingers crossed. We each have our own unique set of challenges, but face it, my dear. Life and Death is in the hands of God only. Some believe that we come to earth with our destiny's already pre-determined, so we really don't have the control, God does. Just believe in that and keep on going. I only pray daily, that if I have to go, that I don't stay in pain my last days. Otherwise, everyone has to go one day, each and every one of us, it is the destiny of humankind. Women are brave everywhere, they are the ones who bear the burdens of mankind. Let's all be brave, the bravest we can be!
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I just wanted to throw this out there just in case it helps anyone. I am getting my receptor tests re-tested. They tested just one block of tissue and told me I was TN, with only 2% progesterone positive. I am now having my pathologist test all the 32 blocks of tissues. Just in case I have a higher percentage of positivity, then I could be given a more targeted therapy. Since our prognosis and future depend on this one big thing, the receptor tests, why not get a second opinion?
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Thought I'd throw in my two cents on visiting these boards and the effect it has on me personally. When I started coming here, I'd just been diagnosed and was frantically trying to find any info I could on what I had as well as experiences from other women with the same dx. It definitely helped me a great deal, and I don't know what I would have done without the support and help from the women here. I think a lot of us have family or friends who caution us on the amount of time we spend here, or how it may affect us. When someone else hurts, it does affect me. I keep coming here not only for myself, but for those who are just starting this nasty journey, to try to "give back" what I received. Yes, sometimes a break is needed and each person may have indications when it's getting to that point. Many past women come back to this board just to pop in and let everyone know how far out they are and it really helps all of us when they do. So I believe every person has their own place here... some to stay and cheer the rest of us on, or cry with us... some just to pop in for info as they start or continue their journey... and some who we may only hear from once a year to know they're still plugging along, happy and well. I don't know if or when I may reach the point where I come here less frequently, but I can tell you I appreciate and think of all of you daily.
Hope everyone has a Happy, Safe, and NED New Year!
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