please help

livesstrong

(((((((((((((((((((((((((((((((((((Cheryl)))))))))))))))))))))) - hang in there - we are here for you.

Cathi - miss you!  Check in soon.

Lisa - good to see you. Hope you are doing better.

Judie - you will ALWAYS get support here.

Gotta run - Hugs all around.

 AE

EWB

I assure you that I am VERY aware of the gift of my family.

Anonymous

In re-reading what I wrote last night, I could see that the words didn't convey my heart. Reading Elaine's post took me back to the days when I had someone's arms gently around me telling me that everything would be ok. I didn't have a clue about the importance of that everyday support. No one else can provide it. I miss it terribly.

What I do have is children who are willing to give/do anything for me, friends who care, numbers to call any time of the day or night, hugs from caring family and friends, people who have "been through it" a sensitive counselor...so much more than many of us have. I am blessed, and grateful. But there is always an empty spot that can only be filled by one who has been by your side through it all...childbirth, broken bones, homework, promotions, sickness, passion, dreams,shared memories, tragedy. One who holds you through the night, comes through the door every single day, someone who appreciates your cooking or any little thing you do, who knows you and what comforts you.

I have so much. I am grateful. I also mourn for what was and feel lost without it.

The support here has been phenomenal. It amazes me how much can come through words alone from people I have never met. Well, I have met Jule and there's a strong hope in my heart that Wren will fly over and land soon.

I have nothing to give these days but do read about and care for each of you and what you are facing. You are strong people and will rise above the challenges of bootface.

Judie

Anonymous

Some photos from Sunday, our first sunny day in forever...Moods of the Cathedral, Morning, Evening sunset refection, and foggy night.

1Cathi

Dear Friends,

I am here everyday, reading the threads and keeping up espically on all of your posts, know that I am thinking, praying for and sending you love everday. 

I am recovering and feeling much better, while I still must sport my 02 tank and canula. I have thought it not right to come here and infilct my very "negative" attitude on those who need encouragement and hope as they begin their journeys through this junk,  I am angry and sad that  I did not have knowledge and wisdom when all this started,  that now I have "lung" issues  from radation treatments, that not one DR. ever discussed this posibility having such an extensive area done, that I now wonder what damage may also have been caused to my heart.  I know that I can not live in fear of "what if" I know that I must get beyond all this and I am, as each day passes and I feel better, as I realize that I will not have to have 02 forever (at least not at this point in my life), I bounce back to "ME" a little more.

I am truly blessed to have a husband who loves me, who finds me attarctive boobless and hooked to a machine  to help in breathing, buttttttttttttttttttt I HATE it,  I cry,pleed, pray and beg for this all to stop and that God will give me sometime to just feel "NORMAL" again.

I love you all, and thank you for your kind thoughts.

XOXOXOXOXO- Cathi

Anonymous

Hi everyone!!!

I know I dont post often but I do read daily to see how everyone is doing and am saddened when I find that some of us arent doing as well.....I keep all of you in my heart!!!!

I was just at the dentist this morning for a crown repair and cleaning..

I had no idea that between bc meds/treatment and high blood pressure meds and some kind of antibiotic I took masses of as a kid which tonsil issues that my teeth had taken such a beating....I now have the beginnings of peridontal disease....they hygenist told me that she sees it alot in post cancer patients due to treatment and meds....

I knew that AI's are known for bone damage but Im on Tamox....she said that several of her patients are and they have issues as well...

Has anyone had issues that have not had chemo??? I figured I was clear on that score, but guess not....

Our weather here has been alot like Karen and Judies......cold and foggy....it seems like everytime I look at the thermo lately it says 27 degrees!!!!! Last week we were flooding and in the 60's....I sooooooooo have spring fever and want this winter to be over!!!!!!

Hugs to alll

Jule

EWB

Judie- I am so so sorry for all the rotten stuff that has happened- you are so right that having that special person with shared experiences to help during the crappy days is priceless and comforting and makes a lot of this more bearable.  I can not imagine doing this alone, even with loving friends and children--not the same. Please take the time to let yourself heal...a lot has happened.  Don't worry about having anything to give- let us care for you now.  Let your self mourn and grieve, find the quiet healing moments, be gentle and kind to your self and know that you are loved, cared for, supported in any way you need just because you are you.

I know its not the same but I send gentle hugs and wish for sweet dreams tonight...Elaine

portiasproudmom

Hi Jule!  Good to see you post here.  I'm with you on the weather---I can't wait for Spring.  However, our weather here in Graham has been beautiful  for the past couple of days.  Crisp and sunny. 

Oh Cathi.  Big ((((((((hugs)))))))).  Damn bootface straight to h*ll!  I sometimes wonder how my treatments have effected my internal organs.  I think, as long as I don't have any symptoms, I'm better off not knowing.  Do you have any idea how much longer you'll need the oxygen?  Hang in there, hon!  My prayers are always with you (and all my dear sisters here).

Judie, those pictures are gorgeous!  What an incredible view you have.  I'm so sorry that the support group hasn't given you the comfort you were hoping for.  It's weird, but I found that talking to others (especially those that had been through it), helped my a lot when I was diagnosed with bootface.  When my dad died though, I didn't want to talk to anyone about it.  Two of my best friends have lost both their parents already, and I didn't even want to talk to them about it.  I'm finally getting to the point where sharing my feelings about it helps.  You'll get there.  I'm so glad that you have such a great support system.  It sounds like your daughters would do anything for you.  It's no wonder---I'm sure you're an incredible mother.

Hang in there Cheryl.  I felt like I'd been hit by a truck after my diagnosis.  It was (and still is sometimes) so surreal.  You're a strong woman.  You'll get through this!  ((((((((Cheryl))))))))

Love and hugs to everyone,

Karen

NanaOfTen

Hi again, Karen, yes, twilight zone ...

I see the plastic surgeon tomorrow. I am so hoping for a surgery date. I so want this out of me. Since the original mammogram/ultra sound, it has more than doubled in size! from 2.2 x 1.5 to now 2.2 x 3.7. I will be going through chemo and know that within the month I will be bald. My hair is about 6 inches above my waist, so before my first chemo, I am having it cut and donating it to locks of love. I have always had long hair. When I got older, my kids said to me: Mom, just because you are getting older, don't go and get "an old lady haircut" They have only known me with long hair. I am starting to crochet me hats and will be buying me lots of them. Have always like hats. 

Hugs to all

Cheryl

lvtwoqlt

Cheryl, Unfortunately I don't look good with long hair so I keep mine pretty short. I know losing your hair is hard but donating it to locks of love is good. I heard Monday night at my local support group meeting that a woman in our area who is getting ready to go through chemo went to the stylist who collects for locks of love here and he was able to get two lengths of hair when he cut her hair and her hair was still shoulder length. My niece is on deployment in the navy now and said she is growing her normal shoulder length hair to donate to locks and will cut it when she returns this April.

I crochet some also and have directions for a close fitting cap made out of the 'eyelash' yarns that makes a fun hat to wear. If you want the directions just send me a pm.

Sheila

my3girls

Hi sisters!

I am sorry I have been away. I do thank all of you for your b'day wishes and for your prayers and trying to lift my spirits.

First I want to say...sorry to our dear Cathi!!! ((((Cathi)))) to you honey.  You are going through a tough trial right now. I am so glad you have such an incredible husband to support you. You come here if you feel negative..don't worry about that..that is what we are here for!! Love you Cathi!!!

Judie...I was sooooooo happy to see your posts! I am sorry your support group did not give you what you needed.  Just remember we are here for you, for whenever you feel the need to come here and tell us what you are experiencing. I will have to look at your photos when I get home..can't view any pics here at work!  Judie, I know just how you feel..missing that "someone" who is there for us, through whatever we may be going through.  It is very lonely not having that on a day to day basis. I can so TOTALY relate to you! Love you Judie!!

Karen...Love the hair girlfriend!!! Looks great!! Curly just like mine.  I should update my photo..cause it's almost to my shoulders now....and I wear it curly all the time now.

Well...I went and had my mammo on Monday. I freaked out!! I was fine for the initial one.  Then they had me wait for the doc to view them.  She came back out, and said "he wants more views"!! Yikes..last time I heard that was my dx!! Then she said possibly an ultrasound. Of course the tears came flowing.  Long story, somewhat short..haha...they took more, and he said the small spots he saw were what he believed to be just calcifications.  Since I had the surgery on my good boob too, reduced and lifted..it can cause this. What a relief!!! OMG...I was freaking! He wants another one done in 6 mos..to be sure.

My doc has me on a higher dose of effexor.  It seems to be helping with the moods and depression.  The fact that I had the hysterectomy...has really thrown me out of wack! I think the low temps of 2 degrees..and tons of snow and gray skies don't help either!!! Very depressing time here! I just feel like...I don't care about ANYTHING!! I hate that...it's not me at all!! Hopefully all of this will pass.  please pray that it does.

I forget what else everyone else has poste.  I do remember cheryl...and honey...you will be ok..we will walk you down the yellow brick road..every step of the way..you will have us with you!

Leaving for Arizona Friday morning for a long weekend!! My favorite sis...and sunshine..will surely brighten my spirits!!

Just celebrated my sweet grandson's 4th b'day!! My goodness...how he has grown!! I love him to pieces.  It is still hard for my daughter, his birthmom...to go see him. She LOVES it, but it is difficult.

Back to work. Know that I think about all of you everyday!! I love you all, and couldn't live without each and every one of you in my life!!

xoxo

Lisa

bee5467

Lisa -- What's your dosage of Effexor?  Mine's been upped to 150, and I'm still very far from even normal. 

EDIT:  Cathi, your flowers are stunning? Are they Amryllis?

  

my3girls

Hi Bee....mine is now 150 also.  I feel some change, but it hasn't been a week yet.

bee5467

Hmmm . . .  The Docs, SW & Onc Nurse atmy center think I'm exhausted, therefore depressed.  I'm going back on Ambien tonight.  I get about 4-5 two to three hour naps every night.  Up about a half hour between each waking.  Not good for rest.  I so hope this will work.  Thanks for getting back to me, Lisa.  Hugs 

portiasproudmom

Thanks for the compliment, Lisa.  My new avatar pic really isn't very good.  I should use a different one.  In fact--I think I will!  My hair is sooooooo curly!  I hated it at first, but it's growing on me.  I was at my dh's company party last weekend, and this woman who I'd never met before, approached me and told me how gorgeous she thinks my hair is.  My mom and the rest of my family love it too.  I guess I'll keep it like this until it starts to grow out straighter.  I heard it doesn't stay this way (unless it was curly to begin with).

I take 150 mg of Effexor XR and it does the trick for me.  I still find myself getting kind of down sometimes, but nothing like before.  And it really helps with the hot flashes!

Hugs,

Karen

my3girls

Karen,

You are welcome!  I hear the same thing from people..they love the curls..and are envious! Who would have thought that? haha.  It's easy..now that I am not straightening it. People tell me I look younger...so CURLY it is!! haha.

I hope this new dosage does the trick for me. I need and want to feel better!

xoxo

Lisa

portiasproudmom

Grrrr!  Couldn't get a decent picture of me to download, so I used Rusty!!  Now HE has pretty hair!

Karen

livesstrong

Hi all!! 

 Lisa - so good to see a post from you.  I know how you feel about the weather - this has been a heck of a winter - have a great time in Arizona - I'm sure it will help lift your spirits.

Karen - my curls are just about gone.  I finished treatment in Feb of '06.  had perfectly straight, fine haair before - now its thick and course - go figure - my hairdresser tells me its totally different.  Nothing like a bit of poison to mix things up. huh?

Nana- try not to obsess over losing your hair- I did - but once it was gone I didn't miss it.  They have so many wigs out there now - I'm sure you will be able to find one that matches your current style.

Jule - good to see you.  How have you been?

 Big hello to all my sisters - have a good night.

AE

 

NanaOfTen

AE,  i'm not 'obsessing' over losing my hair, it's just ONE of the MANY things I will be going through in the days ahead! and thought i'd share how cute/sweet/etc. it was that my kids said to me re not getting an old ladies' haircut once i got older as they always saw me with long hair.

i'm thinking more about the surgery, the treatment, surviving ... my hair WILL grow back, that's minor.

livesstrong

nana -

Sorry.

AE

Shirlann

Hi dear sisters!  All is well here.  Just seem to be getting old or not getting enough things done.

I bought a "Turducken" for the whole family to come and eat on Super Bowl Sunday, it is a mostly boned turkey with a boned chicken inside it and then a duck inside the chicken, then corn bread jambalaya stuffing.  Sounds gooood.

Oh Sue, so good to hear from you.  Time is a marching by, dear girl, soon will be two years!

Cathi, love, don't worry about your heart, it is a little ways from your lungs and not as near the surface.  I know, I love how they don't tell you anything and then deny everything!  They are still denying that rads cause fatigue on the rads site, I could strangle them.  Along with everything else, all the side effects of this beast ARE OUR FAULT!!!!!  

I love you all, Shirlann 

1Cathi

Thanks Shirlann,

Its time for me to crawl out of this hole I have been in,  I would like to take this nasal cannula and place it gently in some Dr's  "bleep-bleep!!!!!!

I have been reliving all my conversations about treatments and so recall how rads was talked about as "a walk in the park" " a piece of cake" how advanced it has become,  and your right they pretty much denied an SE even fatigue - well Iwas fatigued and very much so, and I also recall a massive sore throat about 3.5wks in,  said nope could not be from radiation, it was constant and lasted about 2/mos after rads stopped, and SURPRISE,  several woman I have spoke to experienced the same thing .  Boy do I so wish I had taken the time to "learn" and had known about BC.org at the start of all this,  knowing what I know now, I would never have done the lumpectomy and rads for sure.  Hindsight again - dam DR's , its funny back then I though "hurry up get it out I'm going to die"  and I thought things moved to slow. 

Now I realize I had "time" but fear of dieing and trusting that the DR is always right - I just did what was said.  UGH!!!!!!!!!!!!!!!!!!!

Oh well, time to get on with life,  I see the GP tomorrow and I think/hope he will take the 02 away, see the specialist in 2 weeks to see if I need to do meds/steroids - heck if I get enough steroids in me I can go and KICK SOME DR ASS!!!!

"I'll BE BACK!!!"

1Cathi

Oh I also forgot Shirilan your Super bowl feast sounds very interesting.  The Stadium is about 30 minutes from my house, and as the teams come into town on Monday things start getting really crazy around here,  there are not enough hotels in Tampa so here on the beach we overflow as well, plus it is normal "snowbird season" and tourist time - absolutely crazy but fun. There will be Limos all over the place 24/7 going back and forth,  I always wonder just who is inside them.

My favorite coffee shop is by 2 very "chic" "rich" and "posh" resorts so maybe I'll run into some hottie (ha-ha) hope I don't trip them up with my 02!!! Or maybe I can wrap them up!  SCORE-TOUCH DOWN! 

NanaOfTen

Hi ladies,

Cathi, was thinking of you today. Glad to see you back. I agree re the lumpectomy & rad tx. I wanted to avoid radiation tx as much as possible...for many reasons. As of now, I will be getting chemo. The PET did not show it anywhere else but in my breast, so far it looks ok, but it's grown in three weeks from 2.2 x 1.5 to 2.2 x 3.7. If I went with my first impulse, I would have had a lumpectomy and needing rads - the surgery would have been done last week. I chose to think on it, to learn more before I decided. 

You all here have helped me learn so much and helped make, what i think is, the best choice for me in many ways.

I got my surgery date. Next thursday, the 29th. I am to call the night before to get the actual time. wow. I am having a mast/recon of the left breast. Will have the expansion thingy put in thursday. Funny how all docs think differently; my ox said no rads, only chemo to help keep it away and small chance of rads only if the cancer is on my chest wall. Plastic surgeon thinks I WILL need rads b/c of the size of the tumor.

Guess I'll find out more next week.

Cheryl

NanaOfTen

AE, me too.

Cheryl

geebung

((((((((((Judie)))))))))) - so good to see you and I'm very glad that you are still with us on this thread. I'm glad you have the support of family & friends but it is very sad that you are missing the presence of a loving partner.

Cheryl - I am sending loving thoughts and prayers for the best possible outcome for you surgery and treatments. Everything about bootface stinks and Sue is the best for articulating and ranting about this vile devil of a disease.

Cathi, my warmest wishes to you and I hope you heal up soon. You have had a very rough time lately.

Lisa - have a great time with your sister in Arizona!

Karen - looking forward to a new pic of you!

I have had my sister staying with me and we have talked until late into the night and all day. She has gone to stay with her son for a few days before his wedding on the 26th. I will be driving down to the wedding and will then bring her back to my place for a few more days before she returns to her home in another state.

Love to everyone,

Jane xoxox 

1Cathi

Nana - my thoughts are with you, and for anyone reading my post I do not mean to say do not do rads,  I just mean as a personal choice if I had a "do over" I would not have went that route the first tme out.  And taking time to think things through  -is so the right thing to do.

Good Day to everyone.

XOXOXOXOXOXOXO - Cathi

Shirlann

Yes, I still have a "funky" rib, 10 years after rads.  But of course, it is not rads, according to them.  I, like Cathi, would re-consider if I had known about my rib, but they don't tell you anything.  I asked for a lead apron to put over my belly and tuck under my breast, but they said, &quote;Oh no, you don't need that, this treatment is very precise", my ass.  I would INSIST on the apron next time, I backed down too quickly.

Well anyway, honey, I bet your heart is just fine or you would know it.  And your  lungs can recover a lot with time, but it is annoying how they deny everything, maybe none of us would do this rad thing if we knew all the potential problems.

Where is ULLA!!!!????

Gentle hugs, Shirlann

portiasproudmom

I agree with you, Shirlann.  They don't want to admit that rads cause any negative se's.  I had horrible pain in my ribcage during the last few weeks of my rads.  It was so bad that my onc sent me for a chest x-ray.  When I asked if the rads could be causing it, they totally poo-poo'd me.  Once rads ended, guess what???  Yep, the pain went away!

Hugs,

Karen

Anonymous

What a delight it is to peek in here! This is such an amazing group...individuals who differ in so many ways that come together in kindness and love. I had started to write a post responding to and commenting on all the posts and ran out of gas immediately. Soon, I hope.

Someone asked about the flowers. They are paper narcissus, in a container on my kitchen table by the window. I shot through the flowers and window to the cathedral towers outside. 

Shirl, Ulla was in Paris for the holidays and is active on Facebook, though I haven't connected with her. Perhaps she's taking a well-earned holiday from bootface. I'll bet we'll see her again, though.

Thanks for the uplifting words everyone. They mean more than you can ever know.

PS...I'm having one-step implants a week from today unless I chicken out. It'll give me just an A cup, but is a simple, low-risk surgery and I won't be concave.