Calling all TNs

Anonymous

"I just really thought all of this would just go away and be a part of my past."

LJ that is exactly the reason I continue to come in here. I am afraid to totally embrace the possibility that this "FC" is truly behind me. If/when I am past that point I will probably leave these boards.

The Myth of Positive Thinking Google it. I hate all that positive thinking crap. IMO it only assures the people telling you to do it. Now, that's not to say that having an optomistic outlook abut anything can't improve your daily life, but it sure as sh*t isn't a cure.

I prefer to develop and maintain a way to control my fear and lock it away. I have always been a control freak and my self-confidence often intimidates people. When I was 18 a boyfriend told me that "my self-confidence boardered on conceit". I was devastated... for about 3 seconds (then dumped him). I realize not everyone possesses extreme self-confidence, but I do believe people possess the ability to manage their fears. Practice makes perfect. Lovelyface... start practicing!

cc4npg

When I posted earlier I didn't have a chance to review how everyone was... and... ((((((Laurajane))))))... I am SO sorry to hear your news!  I hate hate HATE this disease!  You are in my prayers.  I will continue checking in to see how you are doing.  I haven't been here much because I also would love to forget I even "had" cancer, but it doesn't go away, even if I'm not here... it's still impossible to forget.  What you're going through right now is all of our worst nightmares and we cry with you.  It's not fair....

laurajane

Wow! Heidi, I needed that dose of you!

The comfort in talking to all of you again is a huge, huge hug. Thank-you 

LRM216

Laurajane:

A few weeks ago, I posted and asked if anyone had heard from you.  You were on my mind.  Since the death of my daughter back in March, my life patterns and everything in my life has changed.  My whole life just began spinning out of control and I kind of landed in a new position - not a better one in the least - but a different one.  I come on to read about you all and always think of each of you and the journeys we are all on and trying to maintain as best we can.

I am so saddened to have to read what you posted.  You fought so hard and everything looked so good.  I can only imagine, judging by the fear I amass with just a pain or a different twinge, or a test or office check up - what you must be going through at this time.  Wallow in it and allow yourself to feel every thing you need to feel - it is all so justified.  Then when you see the doctor and all test results are in - then you put that suit of armor back on and fight again with all your might.  We are here for you at all times.  There but for the grace of God goes any one of us and we all know it.

Keep your chin up, dear sister, look to the sun, and warrior on.  It's another fork in the road none of us wanted to see you have to take, but we will take each step with you.

Gentle hugs to you, LJ,

Linda

Titan

Oh yeah LJ..we missed you too...alot!  Not happy of the reason you are back but we did miss you!..You are a huge part of this TN thread..whether you like it or not...you are always there to support us,

Oh yeah Heidi...I can't leave here either...

Kymn..I really like your posts..you can make me laugh and cry at the same time...

Crap..I guess we are in this together right ladies?   I have two older bros so never had the sister thing...I think I like it..

Suze35

Laurajane - I will be thinking of you, and hoping that this ends up being a "local" recurrence.  We are on similar paths - my chemo ended up not working in the end - and I can truly feel your pain.  My doctor has never been less than honest with me, and I know the road is rough...hang in there.

Titan

Great posts Linda and Suze...great for LJ and all of us here....

Sugar77

LauraJane - so sorry to hear your news.  I'm so hopeful this is a local recurrence...please, please, please. I hate this disease. You're in my thoughts and prayers.

Kelley41

LauraJane - My thoughts and prayers are with you and your loved ones.  I was catching up today and had tears - I hate this disease!

Teka

Lovelyface,

My hair was 2" long when styled by favorite hairdresser, and now feel like a new woman.

christina1961

Laurajane,

I am newer (from Feb 11) and we haven't "met" but I wanted to say that I am so sorry you are going through this awful experience.  Please know that my thoughts are with you and I hope it turns out that it is very localized. Please keep us all posted.

Maria_Malta

Hello Laurajane, I don't write that often but always read the tnbc threads, being tn myself..I add my thoughts to everyone else's above...as someone said, it could be any of us, it could be me in 3 months' time, and apart from this nightmare of a disease, we also have to deal with everything else that life throws at us..I was so sorry to read of the death of your daughter, Linda, and admire your strength and courage.  As you rightly say, we just have to carry on, taking things one step at a time helps...

I'm due to meet my breast surgeon on Saturday week, and he will be scheduling my surgery, and discussing the kind of surgery he is recommending, whether mx or lumpectomy...I feel very strongly that I'd like to have a double mx, but when I mentioned this over the phone, he seemed rather dubious, implying it was unnecessary.. as I wish to go prepared, I'd appreciate any statistics which any of you might have to indicate that there is a smaller chance of recurrence for tn patients after a dmx...or opinions you might have about the issue at all..thanks

mccrimmon324

Laurajane, I'm new to this thread as well, just diagnosed in April and only 1/2 thru Chemo, I just wanted to say I'm so sorry you have to go thru this again.  This disease F#*&@ Sucks!!!!! 

Hugs to you. 

Heather 

rella40

good morning girls,

Laurajane, we also have never met, so sorry we have because of your recurrence..if I can give you a little comfort knowing there are many, many treatment options for you, us, as TNBC.  Most are standard treatments, as far as I know, but they still are getting results with them. I like you, did all the things they told me, and I went back to my "life".  Over 2 yrs of bliss, then, like you, bam, found a lump in my chest wall, and it had spread.  Like you, also, I was more devistated the second time.  But, like someone said, we are more of a chronic disease now, and you can LIVE with that.  I have been on so many chemo combitnations, but we are still beating the beast down, I have been stage IV for 5 years now.  I do the healthy diet, take all the supplements my NP prescribes,  I excersise when I can, and I am a waitress, and just stopped working in Jan., DH insisted I try taking care of just myself while in treatment, so I am.  I know it SUCKS having to go through this again, but you have things left to do!  I don't know about research, but I have had the positive attitude thing going on for over 9 yrs.  If I may indulge a little story.....

When I was first diagnosed in 2002, of course, my DH and I were broken.  We had just started going to a new church (old church, new to us) and the message that day was about "doing all things with a cheerful heart", wish I remembered the scripture. Anyway, I was just amazed how that message fit right into my situation.  So I took those words to heart, and decided I would try to follow those instructions. While I am not cheerful 100% of the time, I have my down days, too, I do believe going at it with a positive attitude DOES make a difference, study or no study, just MO.  It has worked for me, and I don't think I am anyone special, and I know it's hard, but when you are in the positive mode, it just makes life a little brighter for everyone. I look at everyday that I am still walking talking and functioning normal as a bonus.  When I was diagnosed, I prayed to God that he just let me see my youngest (8 at the time) graduate.  He is a senior this year.  God does answer prayers, and sometimes it is YES!  Keep your chin up, recurrence and stage IV both are not immediate death sentences.  Just keep on keepin on (corny I know), and be like me. I AM HOLDING OUT FOR THE CURE!!!!!  Love to all.

Babs37

(((((((LJ))))))))

laurajane

Thank-you all of you.

Linda, I am so very sorry about your daughter. I can't imagine such a loss.

Rella, I can't tell you how much your letter meant to me. I am so sorry that you and many others, all of us are going thru this.  I am going to have a great day today. I was on the pity wagon two days too long. I now climb off of it with a smile on my face. I feel pretty darn good and I will embrace this feeling today. 

i love all of you guys and hope everyone does something special for your selves today. Even if its something small. Indulge in that slice of chocolate cake with a guilt free smile.

laurajane

Maria, I had a masectomy on one side. I just had a clean mamagram on my other side a couple of weeks ago. Even if I had opted for a full masectomy it would not have changed my current diagnosis. The original goal was for a lump. if the chemos I had done had worked to shrink my original tumor. My BS suggested the same to me and told me it was pointless to remove my uneffected breast.

Teka, I just had another haircut last week and I love it. I will try and update my photo too.

Suze, So sorry to hear that we are on the same path lets battle it together. Did you do Carbo/platinin also? 

Kymn

Ah ladies, feeling really down today, got some bad news about a friend on another thread and just hating this disease so much today.I need some positive energy cause I dont have any today.Just one of those days when you just want to cry at the unfairness of it all

A friend is someone who knows the song in
your heart, and can sing it back to
you when
you have forgotten the words... .Donna Roberts.

Suze35

Kymn - you are experiencing the double-edged sword of these boards, I'm so sorry.  They can provide so much support and comfort, but the bonds you make with other survivors make it so much harder when the worst happens.  My thoughts are with you.  Go ahead and cry, everyone needs a day like that.

Laurajane - I'm glad to hear you are getting back your fighting spirit!!  Rella's story is VERY inspiring, I love her posts .  I actually did Carboplatin with my Taxol.  I had an initial 50% response to AC, and when I started the Taxol/Carbo, my tumors and nodes melted away.  At 8 weeks, both my MO and my BS declared it a "normal breast exam."  Then I started to notice my nodes getting more obvious - both told me it was scar tissue.  I didn't push for another scan, which was my fault.  In the end, we think the cancer started to regrow around week 8-9, and by surgery, had spread pretty far.  You can read my bio for the nitty-gritty.  My neck-to-pelvis CT a month ago was clear, so I am doing Xeloda with Avastin in the hopes that maybe it is the chemo my cancer responds to, and that the Avastin boosts its power.  Realistically, I know the odds, so while I'm hopeful, I am also preparing for the worst when I have my PET scan in October.  This disease just sucks, huh??

Lovelyface

Laurajane - You go girl!  I can see that you are already looking at the different treatment options!  Two days of pity wagon was good, but now it is time to get up, brush out the bad thoughts and get on with the fight, save your life with all you've got.  In the Indian culture, we believe that the day we are born, our date of death is already written down and that is in the hands of God only.  Nobody can change that.  I actually never worry about death, I welcome it with both arms, I just worry being sick, not wanting to make my family's life miserable by being sick and having to be taken care of.  This is the only thing I am afraid of.

Rella - thanks for sharing your very positive experiences.  I am very proud of you.

Linda - My heart breaks to hear of your daughter's death in March.  Oh dear!

Heidi -  I will try my best to manage my fear, I like the way you handle yours.  Thanks.

Kymn - Girl, you are right, my case is not that bad, I am making it bad, maybe because I am trying hard not to get let down as this disease seems to do to everyone.  No, I had no node involvement and there was no microinvasion mentioned in a very detailed path report.  I must say though that I am one of those people who is not leaving any t's uncrossed or any i's undotted.  I am doing everything in my power to control things which I can, that is not let doctors delay my treatment or make mistakes.  I even had the path report, re-read, re-tested.  My Estrogen was totally negative both times, but my progesterone was at first 3% positive, upon re-test, it came back 5% positive.  So yes, you are right, my case is not that bad, so I will try to think that there is nothing there now, everything is going to be okay.  Even for the 5% positivity, my Onc. told me that the protocol is to put the patient on anti-hormone therapy.  He said that for some women, he would twist their arms to take the therapy, but due to my extreme symptoms, he is not that forceful. However, right now he told me to consider aromasin.  I am supposed to take Zometa by infusion in August (every 6 months).  But I am not sure, due to all these pains and aches, neuropathy whether these medicines will make my life so miserable.

Suze - I took Aridimex from March till May 25 and then stopped.  My symptoms started around May and has continued till today.  Extreme neuropathy and pain in arms, hips area.  Doctor says it is not coming from Aridimex or Zometa, especially the numbness in the right fingers.  Then where is it coming from?  It is nothing but aridimex, in my opinion, as it started after 2 months, which is when most women feel the pain etc. How can doctor's give us such conflicting information?  Could this possibly be coming from Taxol which I finished on Dec. 28th last year? Anyone experiencing any symptoms from Taxol after 7 months?

Teka - I do want to get my hair styled but am worried they might cut it too short.  When you styled yours, did the back look like a boy?  I will look at styling this weekend and maybe from next week can start coming to work with my real hair.  I can't wait to get back to the person I was, before all this crap started, which is being my simple self.

mitymuffin

LauraJane, Hey girl. I too have been trying to get on with my life, but when I check back here, I always look for your posts. Please know that you are in my heart. You have children don't you? A son? And an older daughter? Do I have that right? You are good at finding joy in your life, and I think you will fight your way back to the joy in each day. God bless you.

Summer38

I always read this thread but don't post too often. I just wanted send some good vibes to LJ - I'll be thinking of you on Friday & Tuesday and hoping for the best possible results!

Kymn - sending some gentle hugs your way too!

riley702

Maria_Malta, it's up to you which surgery to choose, not your BS. I had both breasts removed with a 4.5 cm node, grade 3, TN. But I'm a worrywart and opted to throw everything remotely possible at this, so if it comes back later, I won't beat myself up with the woulda/shoulda/couldas. Do your research as much as possible, discuss it with your surgeon and then listen to your gut, no matter what that decision is. That's what I've done. I'm not pushing you to get a bilateral MX, I'm just saying make a decision you can live with.

Lovelyface

Laurajane - I am looking forward to your updated photo with your new hair.  Maybe I could copy your style.

LRM216

Laurajane, Maria and Lovely -

Much thanks for all your kind words.  Losing a child, is just so very, very painful.  She was 39, but she was and always will be my "baby."

L.

LRM216

Laurajane, Maria and Lovely -

Much thanks for all your kind words.  Losing a child, is just so very, very painful.  She was 39, but she was and always will be my "baby."

L.

Teka

Lovelyface,

My hair has soft waves and due a trim in August.  I love girly talk with the hairdresser.  Remember you deserve the best of the best hairdressers.

laurajane

For those getting their haircut.

I've had mine cut 3 times now and a hairdresser in New York said to not let anyone use a razor. he is so right the first two cuts frizzed like crazy from the razor and my last cut was scissor only and loved them all but this ones the best. I've been so into the girly thing, facials, pedicures and manicures. I really need it and it feels great. Sadly for those of you that can understand. I was just crushed when I broke not one but three of my nails.So I will cut them all and regrow them. For those of you who lost all of your nails like me to chemo what fun to have them grow back. Yes they reeally do. 

laurajane

kimn, so sorry about your friend. It really is so sad.

mity- wow no memory loss on your part. Great hearing from you and everyone else. 

Paintingmywaythru

LauraJane... good luck tomorrow....there is so much that can be done and so much that just sucks.