2012 sisters

Hi ladies.... Can't even try to address everyone individually.... as for chemo, I haven't had all the SEs, but enough to make it suck! ;-) look its not supposed to be fun, its supposed to kill three fucking cancer!!! ... So yes it is making my hair come out, I feel like shit from five hours after until about day five or six, and then I feel great. That's what made today so hard. I spent the day making chicken soup and some passion iced tea (from the Starbucks tea bags) to eat and drink after my next tx Friday. I am so tired of water and soup seemed to be what I wanted last time. I haven't lost my sense of taste so I fear I'm gaining weight!!... But I am losing my vision. Everything closer up is blurry, I hope it doesn't get too much worse. I'm told its temporary though.



I went to the local cancer community center yesterday and am going to check out their weekly support group tomorrow. After that I went to my office and collected all my stuff, hugged some friends goodbye, told my boss I didn't know if I'd be coming back after my disability is up. Of course I KNOW I wont because I already have another job lined up in November. It was really sad for me to leave. Its so strange how much has changed since my dx. An entire season has passed me by. I feel like everyone is busy living LIFE and I have spent my summer focused on living (period). Damn this disease sucks.



That said I have a busy day tomorrow that I hope I can get through. I get tired and need more naps these days. Cancer support group in three morning, lunch with an old friend who I haven't seen in six years, physical therapy for my cording, and hopefully Pilates tomorrow night at my gym! I got three all clear to try to exercise a bit. I'm really hoping I have enough energy left to get to class. i really miss it. Although I'm not sure what I'll do about things that require I lay on my stomach; this damn TEE is rock hard and laying on it is impossible!



So I'm still sporting my super short avatar hair do, but not sure how long in can milk that. I'm getting more bald spots all the time.



Ramols & teeball; thinking of you.... Hang in there.

2fried, where have you been?

Tazzy; sounds like youre doing well and getting east for your rads.

Jpmom; working to hard I presume?

Mcook; hope your recovering well. I was in for two nights, but my surgery was at three pm so I didn't get into my room until eleven the first night.

Moonflower; keep the positive vibes coming.

Websister; I know your counting down with me... *sigh*

Tina...YAY!



To whoever I missed, I'm sorry.... I wish you all a restful nights sleep.

Just need to vent a little, folks.  I have metastatic BC.  Newly diagnosed and thrown for a loop.  Even the doctors were speechless.   Now that things have begun to shake out, I'm going to pursue a second opinion.  I think it's the responsible thing to do since the situation has become increasingly complicated.

My real concern is this: I happened to see my surgeon the same day that I had the PET/CT scan.  He read the results and broke the news about Stage IV to me.  He tried to call my onocologoist, but she was on vacation.  When she returned she called me.  And she was surprised that I knew about this.  Not so much what she said, but the surprise in her voice.  She didn't know that he had shared this news with me.  And I am now disturbed that this "team" is not acting much like a team.  

You know, it's bad enough that each patient needs to be their own patient advocate on a good day.  But it's only me--no husband, sister, mom to be my patient advocate.  I need to fight doctors when I'm well, when I'm tired, when I'm sick, and when I'm just overwhelemed.  I hate this.  Goddammit--they're dropping the ball.  And I'm pissed.  I need to know that they're ALL on top of this.

Thanks for listening.
Susan

Figured I'd check in with you ladies. The worst of the yukiness has passed and looking back at it - it wasn't so terrible. Residual headache - I think maybe from the zofran. And sadly wide awake at 2am - but that might be due to my snoring hubby (just relocated to the couch). If this is all it is - I think I can handle it... So to you ladies anxious about the first txt - remember that we all react differently so go into it believing it will be mild. You can do this. Hopefully i will drift into sleepy land soon since I plan trying to work tomorrow (or today I guess...). Thanks to all of you for your well wishes. Hope you're all feeling good. Tinajason - congrats on ditching that wound vac! Hugs to you all.

And juneau - I meant to thank you for your comment about snacking on crackers and peanut butter. It's the first real food I ate once I could stomach something. Hope your next round is kinder to you and your chrons behaves!

Tomorrow is the day ladies (NSBMX with TE placement). I'm told I should be glad I'm getting the cancer out of me but I feel I'm going in healthy and gonna come out in pain. I'm scared and I've never been scared of pain or surgeries.



I do have a question for you lovely ladies. I've read that you can't sleep on your side. What is the reasons? Is it because of the pain or because of the incisions??

Susan you might want to contact cancercare.org for counseling and help in your decisions about your treatment.

Charlotte

Everyone:  THANK YOU!

Today I have arranged for a second AND third opinions.  I figure I'm right in the middle of some of the best care in the world and I'm going to avail myself ot it.  Records have been sent to Columbia University Medical Center and Sloan Kettering. 

And I want to thank you for the suggestions.  I am going to check them out and I'm also joining a Stage IV support group in Manhattan that should also help me as well.  At least I hope it will.

I'm moving forward.  Damn the torpedoes and damn the doctors!

Susan (Scorch)

Mrscich; I had the same surgery that you are having.  I still can't sleep on the side with the TE.  It's too uncomfortable.  The TE is hard and pushes against your rib cage.  If i make a hole in a circle of pillows so my breast doesn't hit anything I can sleep on that side. (I only had my right breast removed).  It's just too uncomfortable, and yes at first painful. Now that its been 2 1/2 months I am at a point where it isn't so tender anymore.  I have cording from the 5 lymphnodes being removed, but that hasn't caused a lot of pain.

Susan; I will call you this weekend... hang in there...  Keep questioning them.  I understand you can ask that your dr. present your case to the tumor board.  They present it and all of their collegues discuss your case.   I was also told by an oncologist who is a friend of my families that she suggested Slone Kettering as the best choice in NYC. 

So as you can all see, my hair came off today.  I took a bath to soak and the tub was filled, so when my husband came home to me crying in the tub I took the plunge, once again pulled out the clippers and took the rest of it off.   **sigh**

well, gotta get ready for chemo tomorrow -- get me pills in the little am/pm slots and try not to get to anxious....  If you don't hear from me for a few days I'm jsut licking my wounds.

Ok ladies. My NSBMX with TE placement is in the morning. I have never been scared of surgery before but I am terrified of dying. I'VE NEVER BEEN LIKE THIS and I've had quite a few surgeries (tubal ligation, tubal reversal, c-section, hysterectomy). I think my other surgeries were something I did voluntarily or had a positive outcome. I know LIVING is a positive outcome but I don't feel sick to begin with!!!!! Help me! Has anyone else been so terrified of being put under for that long? I'm afraid I will never wake up.

Tazzy, we will pray for you and you will fill us in when you wake up enough to find the keyboard! yep, that's what's gonna happen. Post tommorrow, even if its just I'm ok.



MrsCich, Dame goes for you. Much love to both of you.

Hi ladies,



I have been so very busy lately. My normal life is coming back. My energy levels are getting better so I am doing more. I got behind on this website and my words with friends...



I have read everything! Can't possibly respond to all but needed to say something to some...



Websister and Juneau , you ladies are beautiful. It's hard losing the hair but you guys make it look good! It's fun when it grows back too, all kinds of new textures and colors and staring in the mirror. You will be there soon enough.



Ramols, sorry to hear about your basement. I had to deal with an overflowing poo filled toilet and a vomitorium in my younger daughter's bed during chemo but nothing like a flooded basement! Sorry to here that first round of chemo was so rough. At least you know what to expect and how to plan. Hope it doesn't get any worse for you.



Elizabeth your granddaughter is gorgeous. What a wonder insightful and generous little girl.



Teeball, I Was nervous about the taxol too, especially since it was weekly. Seem have had worse symptoms than me but mine were very mild. No pain at all, minimal neuropathy that only lasted a few days after the last couple of treatments and one lost toenail. My hair started growing back about halfway through it too. Fatigue of course and the damn steroids kept me awake for thre nights in a row if I didn't take something. But it was cakewalk compared to AC. Good luck!



Tina goodbye wound vac! Glad you are healing. Heal fast!



I just dug a piece of suture out of my port scar. It has been red and irritated since I had it removed. I picked at a dry area and the stitch pulled up. I had th same thing happen when they put in the port too. Luckily no problems with the other scars yet though the lumpectomy scar has a deep pit wher the skin folded in on itself too much and is a little annoying...



My cording is getting worse. I keep stretching but it just keeps getting tighter. I know this is temporary but I am getting annoyed at this gift that keeps on giving...



I had my first planning CT for radiation this morning. In and out in 45 minutes. I have big black x's drawn in three place on my chest and covered with stickers. I think I get my tattoos next time. Looking forward to getting this over with and for it to kill any left over cancer cells hiding in my armpit... But not looking forward to losing my energy again. It is really starting to come back now. Oh well, the gift that keeps on giving....



Mrscich, I wish I could make the worries stop for you. Take a sleeping pill if you have one! Hugs and best wishes for tomorrow.



Good luck to all those getting surgery and more rounds in the BGC. Welcome to you new ladies. You have found an awesome group.

Moonflwr... I absolutely love your concern over me... but I am only going camping... no surgery, no chemo.   Stamina levels are shot just because of chemo and surgery

Firestorm... I dont know anyone who changed stages with BC, but a friend with colon cancer went from stage 1 to stage 2... sorry not much help.

jpmom... sorry the cording is bothersome to you.  that sucks eh, if its not one thing....I am meeting my physio next week - I just want confirmation that I am doing OK.  And to keep LE at bay as much as I can.

fuck I hate cancer.

Peace and hugs all xxxxxx

Hi everyone!  Im new. I was Diagnosed on Aug 13, 2012. I am 35 and have 4 kids. Girl 16, and 3 boys; 5, 4 and 2.

I have been working out hard for about a year and a half. I cant even remember when I first noticed my 'lump'in the left breast. It seemed like my pectoral muscle was hardening, which was happy for me since I had been lifting weights. Then my breast started looking different; getting smaller, dimpling in (at the bottom of the lump, as if its pulling the skin in toward it). But I had lost about 15 pounds and stopped breastfeeding just last December, so I just figured it was normal changes due to those factors. Eventually that 'lump' got to feel like a 4 inch long hard tube. I thought maybe a clogged duct? But it didnt go away. By then, my annual was scheduled for the next week so I waited till then. Midwife ordered a mammo and U/S. Radiologist urged me to get a biopsy ASAP.

Mammo showed calcs all along that long tube like lump. U/S showed another spot that I could not feel, but now I can. Biopsy found DCIS and IDC in both areas. Grade 1/3. (Not sure exactly what that means.)

So I have chosen bilateral mastectomy with recon. I am only 35 and do not want the worry for the rest of my life. Besides, once I kick cancers a** I would like to still look decent for the remainder of my 'young' years.

My husband is stressed. My Mom is upset. (She had BC at 50, small lump->lumpectomy->rad  now cancer free for 3 years) I am actually fine. I just feel like it is what it is, there is a clear path to follow, and I plan to follow it. After surgery when there is more info we can regroup, but whatever it is we will deal with it.

Glad to be here with fellow fighters...although not thrilled to be here with cancer...
Good luck ladies! 

Tazzy, I blame chemo. You already had surgery, guess I am just messed up. Duh! Love you anyway, LOL



Miranda, sorry, but welcome. Once a decision is made, it actually is a bit less stressful. (Autocorrect changed it to dreadful, that works too! LOL) it isn't easy, especially with kids, but you can and will do it. Much love.

Miranda, welcome. Sorry you are in this situation too. Nobody deserves it but here we are. As you said, just gotta do what what we have to to kick cancers ass and live our lives. A lot of us have young kids here too. I hope you find some comfort here as I have.