Calling all TNs

NavyMom

Oh Ruth, my heart is breaking for you and your friend.  It is one thing to watch the people we care about slip away but quite another when we must face our own mortality as well.  This must be so hard for you.  Please remembe rthat even though we have never met, we do know each other quite well.  And care deeply about each other.  We are here for you during such a difficult, painful time.  Let us know how you are doing.  Hugs and prayers sent your way.

Navy

Lovelyface

Suze - Oh no, I did not choose the User Name "Lovelyface" because I think I have a lovely face.  Let's just say that many of my User Names have the word "lovely" in them.  I think the real long hair curly wig is what makes me look lovely but thanks all for the kind compliments.  I do think that the sari I wore at my son's wedding was absolutely out of this world, it was super gorgeous.  And that too is making me look good.  I am glad I spent all that money on myself at my son's wedding, the photos are priceless.

Anonymous

Here's a lovely PowerPoint that some of you may enjoy. I converted it to Quicktime format so hopefully it's viewable for both Macs and PC. It is NOT my creation. I just thought you might enjoy it.

Hope you can view it:

http://albums.phanfare.com/isolated/PhorPhQf/1/5213419

Titan

Thanks Heidi..for the video..alot of truths there friend!

Lovelyface...nice to put a pic with the name...and you are lovely.really....you look wonderful!  I'm glad to see you happy..good thing!

Ruth..that sucks about your friend...sending warm thoughts to you...and your friend...she is lucky to have such a good friend..

Ahh..the wedding dress...well..they exchanged it...no problem..my daughter and I and the store personnel smiled through our gritted teeth..fake niceness..but we got it done...They said once my daughter found the right size that we could just take the one off the rack...I said..(through my smiling gritted teeth)..oh I don't think so...why would I want a dress that has been tried on and has armpit stains and make up on it? Anyway, a new dress is on the way..I just hope it gets here before the wedding...

With my son's "bird" finger surgery and dealing with the wedding business I'm almost glad to go back to work tomorrow...

BernieEllen

Ruth, so sorry to hear about your friend.  Big hug to you both

alamik

Ruth~~~~ I just wanted to give you some comforting words. Not only are you grieving for the wonderful strong, and brave woman that your long time friend grew up to be..... but I'm sure you are also grieving for that little innocent girl that you enjoyed so many childhood memories with. Just remembering all the fun times together as children playing and never thinking that any of this could happen to both of you. Growing up together and talking about boys and giggling all night at sleep overs and parties. Remembering how much fun you had together, living life so freely when things came so easily and laughing together until you both fell down into a fit of giggles. And now this precious woman has grown and remained your friend throughout all of life's ups and downs and the two of you must have faced good times and bad times together. But your friendship has been constant and strong. It's a rare treasure to be blessed with that kind of friendship. So cherish every moment you can with her even if it's long distance. She knows you are in her heart and she is in yours just like it was meant to be even as children. Please know that you have so much love and support here for you.

I also have a childhood friend that was diagnosed with breast cancer two weeks before me. We have always remained close through all these years. In fact, she is my longest time friend having met when we were 5 years old. So I can closely understand some of what you may be feeling. This cancer gig just totally sux!!!

Sending you so many hugs!!.............. Kimala

tnbcRuth

Thank you for the good thoughts and words.  Kimala, you are absolutely right.  

Lovelyface

Kimala and tnbc Ruth - you both are very lucky to have such wonderful and strong women as your childhood friends.  You surely are blessed.

Fighter_34

Lovelyface: you are HOT!!! Let me make you feel even better. I was thinking this pic must be before chemo. Never feel bad about asking another ONC his/her opinion. I have my regular ONC and my back up ONC stored in my cell phone. If I can't get into one I will go to the other or maybe them both if you get what I mean.

TnbcRuth: it's hard. I can't add anything other than that. IT'S HARD. Keep her in your heart, stay strong, and try to move forward. She got the opportunity to raise her kids. That's what weighs on my mind often, and that is way I am so overly concerned when it comes to my situation.

I am beginning to hate the word CANCER.

Fighter_34

Hey ladies since it is so hot I did something last night.

I took a cup of blueberries, ice, and almond milk (or whatever milk you like) blended it all together and placed it in the freezer YUMMY ICE CREAM. Lowfat and good for us.

I fooled myself I will be doing this more often. 

Kymn

Good Morning,have been away for a few days camping and have lots to catch up on.

Ruth I am so very sorry to hear about your friend,it makes me feel so very sad for all of us just the uncertaintly of it all.I am happy to hear that your friend has such a strong postive outlook on life that must make it much easier for her family.

Lovely face I too think your pic is beautiful and that is a gorgeous wig.

Titan glad to hear your son came out of surgery ok and that you were able to exchange your daughters wedding dress.

For all going through crappy SE sending postive healing thoughts your way.

This weekend while I was camping a met a lady who was also a TN sister she is doing great and is now 5 years out just thought I would share that postive news with everyone

Hugs Kymn

Suze35

Titan - yay on the dress and the surgery!  I can't wait to see pics - from the wedding that is ;-).

Lovelyface - oh, I didn't mean to imply that is why you chose your name!  Just that you truly are lovely - that sari is definitely gorgeous!!

Kymn - hope you are starting to get your energy back.  You sound good :-).

~~~

This Xeloda is kicking my a$$, ugh.  I keep getting headaches - not migraines thankfully - but they are still annoying, and I am drop-dead exhausted!!  I tried to set my alarm this AM to get out early, and don't even remember turning it off.  And by 2:00, I just feel like I've been up 24 hours straight.  Ugh.  No hand and foot problems yet, thankfully. 

Feeling cool in the NE - have a good day everyone.  I'm off to snooze before my doctor appt.

kathyrnn

I'm home to mow the lawn and clean up the mess I left cooking for the party last week, and I think I've caught up with you all.

Rella - I don't know of any foods that boost WBC, but I know that having a protein deficiency can cause people to not produce enough white cells, so the only thing I can suggest is making sure your diet has adequate protein.

MBJ or tifJ, I'm not sure who asked but Addison's disease is a deficiency of adrenal hormones.  It can be primary or secondary.  Primary is when the adrenals don't produce enough hormones.  Secondary, is when you've been on steroids for a long period and then they're stopped.  Taking steroids, stops the adrenals from producing them, so sometimes it takes time for them to kick back into producing

Titan - hope your son is doing well and if he has a brace, he has as much fun with it as I did.  I severed a tendon in my index finger a couple years ago, and had to wear a brace for almost 3 months.  Every guy who asked me "what happened" I looked at dead serious and told them "I broke it doing a prostate exam". I wish I took pictures of the looks on their faces, but it was the butt clench they all unconciously did, that was priceless.

tnbcRuth, thank you so much for the Lyrica info, and I'm so sorry about your friend.

Suze - hope you feel better soon

Lovelyface - sounds like somebody needs a new doctor!!!  One of the things I don't like about my Onc. is that she knows absolutely nothing about me as a person. (Am I married, do I have children or a support system, do I work, do I have any other responsibilities in my life.  Nada, nothing.  She just found out I'm the sole caregiver for a frail, ill Mom, because my cousin decided to give her some hell, lol)  I know I'm old school, but I can't imagine that I could have been effective for any of my patients without knowing them as a person. 

Heidi - loved the pictures.  Grew up with horses and swimming bareback with them was one of our favorite summer passtimes.

Mccrimmom- I'm sorry for your husband not being understanding when you need it, but thank you for reminding me why I'm happy to be divorced!!!

Painting - thanks for all the tips.  Personally, I have 4 different wigs.  A redhead, a light blond, a darker blond and a brunette.  Hell, if I have to have cancer......dammit I'm gonna have some fun with it.  I went out last week with one of the blond ones.  A girlfriend came up and remarked that it looked great and that I looked like Jaclyn Smith.  One of my male friends disagreed and said that he thought I looked like Farrah Fauccet (?sp).  Quick as a bunny I looked at him and said, "if you don't mind I'll stick with the Jaclyn vote, Farrah croaked!"  Irreverant....yes.....but we all had a hell of a laugh!

I had my "Shave the Head" party last week and it was a great success.  We even had the Boob cake with the sign that said "Stupid Boob" stuck in the R- breast. 

 A question please ladies, what are "tumor markers"? 

Suze35

kathrynn - glad to hear your shave party was a great success! I need one of those boob cakes, just cause, lol.



~~~~



Had a MO appointment today. My doctor said I looked too good to be on Xeloda, lol. She thinks we may up the dose - sheesh! - because she wants me on the largest I can reasonably tolerate. We'll do another cycle then reevaluate. I'll be starting both Zometa and Metformin next week. She feels there is some merit to Zometa, even for just bone mets, and it is only 2x a year. She also thinks the Metformin data is compelling, and is willing to give it a shot. She even mentioned the beta blocker that has gotten some press recently, but I'm pretty sure she'll only put me on that if the Avastin ups my BP. I'm ok with that, my BP trends low anyway.



She's not concerned about my shoulder, it is slowly feeling better and would have shown up on my recent CT scan if cancer. The little thing on my scar line is likely a stitch, but hard to tell, so it is a wait and see. It isn't getting bigger, may even be getting smaller. I'm cool with that.



I really feel my MO is trying to squeeze as many percentage points out of me as possible, something I truly appreciate. I'm trying my best to do my job - diet and exercise!



Have a great night everyone!

OBXK

Lovely- you look it! I'm glad you felt beautiful.

Titan - so glad you were able to exchange the dress without coming to blows. It must be nice for you both, to have that behind you. Hope your son's finger heals well.



Suze35 - sorry you are feeling punk. Wonderful that you have a MO you trust.

Sending you energetic vibes.

Ruth - Sorry for your great loss.



Wishing everyone a great tomorrow!

Lovelyface

All of you sweet ladies, thank you so much for your kind compliments, it truly makes me feel good.  I took a lot of effort to dress up and look great even with all the ugliness of the disease, and all the extra things such as the nice clothes, wigs and accessories helped me be my normal self.  I hadn't looked this good even before the diagnosis, so it was a truly blessed day.  And Yes, we can still be super gorgeous during the treatment and afterwards too, there is no doubt about it.  Actually, I feel that chemo somehow improves our system in some aspects.  I did have a slight skin color change during my treatments, but now 7 months after, the coloring has returned.  Sometime this week, I plan to go to work, without any wig.  I was almost going to go without a wig today, but saw some grey hairs sticking out in the front, so decided to touch up the roots, before I go.  It feels really bare not having my long hair, but this very short hair feels liberating and it is afterall my own now.  I think I can do it, although it does require some courage.  I am sure many will ask me whether I had a hair cut.  My hair is about 2 inches all over.  I haven't had it styled, scared they might cut off too much. I plan to wear a hairband and long earrings, just so that I don't look like a man/boy, and look feminine.

Luah

Suze - your MO sounds awesome!

Lovely: I had long hair too (and miss it), but so many people compliment me on my shorter look, I figure I'll stay this way. So much easier!

rella40

hi everyone, hope you all are having a sweet day.....

Suze, I know how you feel, Xeloda is draining me of energy, too.  A little nausea, but mostly just the dragged out feeling you describe.  Just started day 2 of cycle 5, and I feel like I have worked all day, and I haven't done a thing lol

Ruth- so about your friend, we are hear to listen and comfort you. You are in my prayers.

Kathryn-never heard the connection with protien and WBC, and I have gotten so I eat less and less meat, so I am going to up my protein intake and see if I get any results. I don't know alot about tumor markers, either, so it will be interesting to hear what others have to say.

Titan-good news about the dress--lol I could picture the whole scene as you described it, oh to be a fly on the wall! Good for you for standing up for a new dress, you pay enough for them, you want to be the only one that has had it on!

 Fighter- the shake sounds great! I love blueberries.

Kimn, BernieEllen and Luah, nice to hear from you, been wondering about a few people.  Anyone heard from MBJ?  I know she hasn't been feeling well, I don't jump around on too many threads, so just curious.

BernieEllen

Hi to everyone.  I will never have my hair long again.  Not this short but a new short style when it grows back.  Chemo postponed - low bloods but i have already worked the extra hours and MIL coming over so Holiday for me now.

Stupidboob

Hey Gang,
It is me again............:)   I still have not read the post and for that I am sorry.   I have been reading on the treatment link.    I have to start Taxol Thursday and I am so SCARED from all I have read that I am just wanting to call it quits.    Everyone keeps telling me I can't, because I have to fight this will everything I can.     I hate to drum up this subject again, but I need help in dealing with it.  

I will read the post soon........I have just been in such a funk with all the side-effects and just feeling yucky and scared.      I am scared that with the Taxol if my feet go numb I will not be able to get in my pool or even walk.   I am scare of everything about it.     I was told that I have to get Tagament and so I bought some over the counter to make sure I was not allergic to it and to take one fear away, but guess what LIKE NORMAL.............IT MADE ME DIZZY.    I am so sensitive to meds and this only adds to my fears.   I have a call into the Oncology social worker to help me.   I have a call into one of the nurses and still waiting. 

Also, with reading I have seen where some say to figtht for the Abraxane instead of the Taxol (the same) just no chemicals to be allergic too.     If my doctor denies this do fight for it by getting another doctor or go with what he says............I don't want to just give in, but I also don't really feel like switching doctors.  I AM TIRED!!!   Just ready to give up all together, which is making me and my hubby miserable.   People will say, either do it or swivel up and die, those are your choices.  

Kymn

Lovely face did you say you are 7 months PFC and only have 2 inches of hair??? Oh goodness I was getting my hopes up too high I better change my thought pattern here.

Over all still feeling sore all over with heavy arms and legs and no energy wish I wasnt working. Feeling depressed too with the weight gain sorry to complain but DH doesnt get it cause the chemo is over so he is waiting for us to get back to normal....wonder how I do that?

Stupidboob

Lovelyface............thanks for the well wishes

I am in the same boat as you...........I am to emotional and since I suffer with anxiety, they all say well I think alot of your issue is anxiety.  

I tell you what I could go in and tell them my toe fell off and they would say, well if you were not so anxious about things.   Makes me want to say, idiots my freaking toe is hanging off and it was not because I was anxious.     When I get mad I cry and then this makes me look that much more emotional.   

I hope you feel better soon.    I totally understand your feeling about not belonging anymore

Stupidboob

KYMN that is what I keep saying.............that when the chemo is over everyone expects things to go back to normal in all ways, but it is never over for us, the patient

Luah

Stupidboob: Please try not to stress about the taxol. Everyone is different but I know many, many women who went through it without any serious SEs whatsoever. I did 12 weekly taxol and it was VERY tolerable - I pretty much felt like normal. I worked. I worked out. I skied every weekend. My hair began growing in. I had some slight tingling in my fingers for a couple of weeks and a bit of a rash on my hands, hardly noticeable. My fingernails darkened and a couple of toenails eventually fell off. That was it.

I'm not saying you will be the same, but please know that taxol is very doable. You will get through it!

Stupidboob

mccrimmon324 I thought the same thing when my mother fought lung cancer.   I tried to be so positive for her that I would not allow her any negative thoughts either.   I WAS WRONG!!!   I can't change it now since she left us in 2003.  I miss her so much.   Now that I fight this ugly monster I know my mom wanted to slap the crap out of me, with all my positive stuff I tried to throw at her.   I get so sick of all the "positives" that I want to hide..............I know we have to stay positive, but sometimes we just need to have our negative moment.   I hope things are looking up...

Stupidboob

LUAH...................thank you so much.    Do you feel that doing it weekly helped?   I am to do it every two weeks and I have been reading it is better with weekly treatments

Stupidboob

Titan glad your son's surgery is over.................never hurts to have a good looking doctor....:)

Lovelyface

Kymn - yes, unfortunately, in 7 months post chemo, I have only approximately 2 inch long hair.  It does take a long time for us to get our old hair back.  I had thought the same thing, that I would have my own hair by the wedding on June 18, but no way.  July is my 7th month and I am still wearing a wig to work.  I did not  have courage yet to go with the short hair to work, so am wearing a wig today.  One of these days.........I hope.

Stupidboob - Luah is correct, please don't stress about Taxol.  I did dose dense Taxol, meaning I took it every two weeks.  During the treatments, I felt very normal.  It is very doable.  You won't be allergic to it and you will be just fine.  I am a very highly sensitive patient - to all meds.  I am one of those people who doesn't take any medications because of SE's.  But even I was able to tolerate Taxol.  I finished Taxol last Dec. 28.  Just now, in July, I am beginning to have lots of neuropathy.  I know that aridimex has caused this, but the Onc. tells me that the numbness in my fingers is not coming from Aridimex or Zometa and that it may be coming from Taxol.  I strongly 100% disagree with him.  I feel that aridimex greatly reduces estrogen in a woman's body, therefore, flaring up all areas of the body where one has weakness in joint, spine whatever.  I feel so damaged these days due to the neuropathy.

So, please rest assured that you will be just fine with Taxol.  It is actually the easier drug to take in.  Don't stress so much, you will get past this time in your life.  Just try to be comfortable, watch lots of movies, exand your mind by reading and trying not to read up too much on BC.  Just know enough so that you do the right things.  I was scared of Taxol myself, but it was the easier of the two durgs, it was very doable.  Life is throwing this BC to all of us, every 7th woman is diagnosed with BC these days, so we just have to deal with it just as we strong women deal with bad marriages, bad boyfriends, sick parents, sick children and just as the whole world's problems falls on a woman's shoulder, a common thing everywhere. When all is done, then you can concentrate on taking the toxins out of your system by exercising and doing all the healthy things, post chemo.

I feel that each person's destiny is unique, therefore, please don't connect your mom's destiny to yours.  Your cancer is completley different and I am certain that your destiny will be different.  You WILL  get past this soon.  Time flies and this shall be history one day.  I hope you can see the light at the end of the tunnel.

I do understand what you are saying about being positive.  I do not ever pretend to be positive when I am actually not.  I am a realist. I cannot be one way in my heart, and pretend another way on the outside.   I also hate it when people tell you to be positive, about not to be anxious, etc.  Even my doctor told me not to be anxious. Maybe if I become inhuman I could reduce my anxiety.  It is okay to be anxious, but get all your information in order, organize your mind, remember that we all have to leave the world one day, no matter what we do, and just rest after that.  Write it out if you have to, what your plans are, what you are going to do, which is treat your body with the best knowledge you have, what God is making available to you, and then, relax and see what the outcomes are.

I am sorry, this is not meant to be an advice, I guess I am talking to myself really as this helps me.  This is what I tell myself, so I am basically sharing this with you.  Good Luck!

MBJ - I am getting really worried about you, where are you, my friend?  I am greatly missing you.  Are you okay?  Someone explained Addison's disease here in one of their posts and it does make sense.  Having low temperature could be because of low adrenal hormone functions.  Oh dear, I truly hope you are doing okay.  Please write when you get a moment.  Sending you lots of healing love your way today.

Suze35

Lovelyface - beautiful words of advice and comfort. 

Stupidboob - all I can add is that I did weekly Taxol, and it was very doable.  I had very few problems.  Rest assured that the nurses will watch you VERY closely on your first day, and if there is any trouble, they will jump on it immediately.  And your doctor can always move you to weekly if need be. 

MBJ - echoing Lovelyface - I hope you are okay.  Please let us know!

LRM216

Stupidboob:  Everyone is giving you good advice regarding the Taxol.  By the way, it's not the doctor you would have to fight with in order to get it - it's the insurance company.  It is very expensive and insurance companies ordinarily will not pay for it unless you are allergic to both taxol and taxotere.

Wishing you the best