Calling all TNs

cc4npg

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.  

MBJ

cc4npg: well said!

LRM216

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!

LRM216

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

Teka

LRM216,

But you do talk off-line about on-line BC patients!   Correct?

MicheleS

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??

Anonymous

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!

Anonymous

MicheleS- THAT is the $64,000 question.

LRM216

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.

LRM216

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

kelben

thanks Heidi for your reminders to breathe... one day at a time.....breathe

Titan

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..

MBJ

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!

LRM216

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

Anonymous

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!

Sugar77

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. 

Titan

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??

mommafluff61

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! 

Lovelyface

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!

Lovelyface

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?

cc4npg

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!

slcst12

Michelle:
We must have posted at the same time before, I missed your post earlier.

I'm so sorry for your bad news. I think others have good advice at this point. It's very early in the game. However, I can't help but share your feelings to some degree, DH and I have talked about traveling and taking the kids to Disney and all that fun stuff. And yes, over the holiday break we did visit our lawyer and get everything squared away. It was the most depressing thing I've ever done.

Even though my surgery was a day earlier than yours, I am still waiting for my results. The BS was on vacation all this week, so they didn't schedule my follow ups until Jan 4th. I find out then whether or not my sentinel nodes remain negative and whether or not they got clear margins. I also find out about when to start chemo.  I suppose I need a port. That whole process creeps me out.

To the other ladies who have had lumpectomy:

Why does my boob hurt so bad, 11 days after surgery?  Like--it's so painful, almost like having mastitis (for those of you who breastfed your children). My nipple is ON FIRE, and I can't even tolerate clothing. My boob is swollen (Huge) and this is the one where they *removed* tissue...shouldn't it be smaller by now?  Ouch.  Was hoping some comments on this--anyone with experience...I will (of course) ask at my follow up, but it's not till Tues.

Have a great new year everyone!

Babs37

I agree with you girls. My mom is the one who urge me to be part of a forum like this to exchange with women and even more mothers who are in the same situation as me. Even if our families are very understanding, I feel that NOONE understand more how we feel inside then someone who is living with tnbc. So I finally listen to her and I'm very happy I did. And I realize that even if some stories scare me and face me with my own fears and mortality, it does in the end make me stronger and make me want to face this cancer with all I've got! And when I hear that someone passed away like Carin Rose, even if it makes me sad, I get confort in the fact that she died peacefully surrounded by the ones she loved, and loved her. If ever I go, I would want it that way too. So thank you all for being there with your stories and comforting thoughts. We need this!

Stay strong.

  

cc4npg

slcst12:  I would strongly urge you to call your BS after hours number and tell them what's going on.  It may be nothing, but it could be infection and you definitely don't want to wait until Tuesday to address this.  Besides, it will give you peace of mind if you have it looked at and they feel it's ok.  Swelling, redness, burning... can be definite symptoms of infection.

LRM216

Lovelyface:

I too would do the same retesting.  I think it's a smart move since you showed some, allbeit a small amount, of progesterone positivity.  I had mine retested when my lumpectomy path report came back as "triple negative as stated from original biopsy report".  My BS said no reason to recheck - they will just go by the original biopsy (which is only a tiny shred of the tumor).  My onc had a fit and demanded it be rechecked.  Of course, it still did come back as triple neg, but at least I have no doubt.

good luck and keep us posted.

MicheleS

here's to a happy, HEALTHY new year to all of us!!!!  pls stay safe tonight.  xxoo

Lovelyface

slcst12 - please don't delay calling your BS or anyone who is on call and tell them about your pain.  I had a very bad experience, there was an infection building in mine after surgery.  I had a huge infection due to the delay in getting proper care, and now have a sort of indentation.  It has filled up quite a bit now (5 months later) and I am not that disappointed, but if not for the infection, it would have remained normal.  I experienced a lot of pain after surgery and during chemo on both.  If you feel they are getting really red and swollen with pain, please get to a  hospital, as you don't want to deal with an infection.

MBJ

stlst:  Get yourself to a dr immediately!!!  Better safe then further complications.  Gentle hugs.

These boards have helped me so much, I can't even begin to say.  When I was first diagnosed I thought it was a death sentence.  These boards bring me so much comfort and support and it gives me a safe place to speak with others in the same situation.  Without all of you I could have been in a much worse place then I am.  It also takes the burden off of my DH and friends and leaves me free to discuss other things. 

mommafluff:  Congratulations on maing it through your first chemo.  I hope your SE's are few and far between.  Hugs.

Happy New Year Everyone!!!

mitymuffin

Mommafluff61,I found that promathazine did practically nothing except put me to sleep, but Zofran worked much better for the nausea and didn't knock me out. 

I did not use any cold agents (peas or gloves) on my fingers or toes and my fingernails all did fine. My big toe nails look damaged, but they stayed on as did the rest of the toenails. 

So sad, and frightening, about Caryn Rose.

I finished radiation yesterday. All done now with treatment (hooray!) but facing that scary place others have described. I tell people that this year I've learned to walk on air. By that I mean going forward each day without looking down or back. 

jenn3

sclst - I agree with the others, if you haven't called the dr, please call or go in ASAP and let us know how you're doing.

Michelle - ditto to what the others have said.  I know this is overwhelming and a lot of advice is sometimes easier said than done, but like Heidi said - take it one day at a time and try not to look too far in the future.  (((hugs)))

Melissa - The day to day worries are there, it happens, but take it day to day.  I am prepared, but I really try not to worry about what I can't control.  Again, easier said than done, but if you can tell yourself to slow down, breathe and take it slow it helps.  (((hugs))) we all need them.  And.....it's okay to ramble - I do it all the time, that's what we're here for.

My onc used to tell me to stay off of the internet, but I think he worries about me becoming "addicted" to the internet doom and gloom sites.  I also think he worries about some of the crazy information found online.  I don't know how I would have gotten through chemo, bad days, nights and my crazy mood swings without all of you.  My family also tells me that I shouldn't be here, but I think they just don't understand our need to connect with one another.

Sugar - I really, really enjoyed meeting you and thank you so very much for my Canadian gifts.  I LOVE them.

Today is my oldest daughter's birthday, so I need to wrap things up to go cook the meal she requested (Salmon w/spinach and a side of roasted asparagus) so it'll be ready when she gets here.  I still can't believe I have a 27 year old daughter.

Hope everyone has a Happy and safe New Year.