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Topic: CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.

Forum: Bonded by Breast Cancer —

For those who have met on Breastcancer.org and want to continue growing their cybersibling friendships beyond cancer.

Posted on: Jul 18, 2015 05:14PM - edited Feb 20, 2016 09:31PM by SlowDeepBreaths

SlowDeepBreaths wrote:

I'm hoping there isn't another thread like this. I did a search and saw one for stage 4, but nothing for everyone else. My very special friend on BCO (Tomboy), and I have talked about a Crazy Town thread for awhile now. I know she will be happy I finally took the bull by the horns!!

I wrote a little story about visiting Crazy Town last year on my blog, and I received some lovely emails from women all over the world talking about how terrifying those feelings can become. I thought I would share that story with my BCO sisters. I know many of you can relate to the craziness of worrying about recurrence or progression. I think my experience epitomizes the crazy place our minds can go. I've found when I can laugh at myself, I always feel better.

"My master bath has its own little room for the toilet. The sink, shower and tub are all in the same room. At night when I have to use the bathroom, I always turn on the closet light which is right next to my sink. This way I don't have to turn on all the lights above the sink. They are very bright and there are a lot of them. I do this so the brightness doesn't wake up my DH. Being the OCD person I am, I always wash my hands after using the restroom – even in the middle of the night.

One night last week, I was doing my usual ritual and I caught a glimpse of a big blackish/brown mark on the upper left side of my chest.This thing was huge. I could feel my heart beating out of my chest when I caught a glimpse of it. I'm sure many of you will know what I'm talking about - that feeling of dread.I ran my fingers over it and it felt raised. I couldn't imagine what it could be – it was SO big. I thought, "Oh great, here we go again, now I've got skin cancer." Then I decided to risk waking DH up by turning on the millions of lights above the sink. Then I got a closer look. UNBELIEVABLE!!……it was a piece of chocolate from a cookie I had eaten earlier!!!!! Apparently it had melted into my chest and I went to bed that way. Can you imagine?? Now if that doesn't give you a good laugh, I don't know what will. CRAZY TOWN!!!"

I have many stories since diagnosis. I call it going to Crazy Town. Some of them are funny, others not so much. I usually go there in the middle of the night when everyone is sleeping, and my mind wanders. There are no trains, planes or busses out of Crazy Town in the middle of the night. I also go there at times when I'm waiting on test results. I hope we can all share our Crazy Town stories. Talking about it has helped me to stay on the outskirts of the town. I've been really good about not visiting lately, but this week it's been a real challenge.

If you have tests coming up, or you just have a day where you're worried more than usual, or if you just want to hang out and chat, please stop in to visit. It is my hope we can have some fun here and get each other through on difficult days with humor, kindness and hugs!!

Much love to all,

Beppy ツ

P.S. If you've just been diagnosed, I strongly suggest starting a blog. Whether it be just for yourself, or you'd like to share it with others. It's been a good outlet to get my feelings out as well as a wonderful timeline to refer back to when needed.



Great info about breast cancer and PTSD:

http://www.healthline.com/health-news/cancer-treatment-leaves-survivors-with-ptsd-scars-031215#3


Dx 4/2016, TN mets to lung. VATS left upper lobe wedge resection. "Fall seven times, stand up eight" Japanese Proverb Dx 7/2013, IDC, Left, 1cm, Grade 2, 0/0 nodes, ER-/PR-, HER2+ (FISH) Dx 7/2013, IDC, Left, 1cm, Grade 2, 0/0 nodes, ER-/PR-, HER2- (FISH)
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Jul 27, 2015 03:32PM queenmomcat wrote:

Slow Deep: sorry--I think I read The Space Merchants and Murder must Advertise one two many times (both set, wholly or partially, in advertising agencies) Hmm...moving on to 'punching clowns', and not even gonna touch the ambiguity there. We all need something to clobber once in a while.

My sympathies to those with upcoming tests! Waiting for results was the worst for me. Well, surgery wasn't great, and chemo's miserable even with all the advances....but still. There in spirit for you. Let me know who to haunt!

Dx 5/27/2015, DCIS, Left, 1cm, Stage 0, Grade 2, ER+/PR+, HER2- (IHC) Surgery 7/7/2015 Lumpectomy: Left Radiation Therapy 8/31/2015 Whole-breast: Breast Hormonal Therapy 11/1/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 12/9/2015 Reconstruction (left)
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Jul 27, 2015 03:58PM littleblueflowers wrote:

May I join you ladies? Although I haven't landed in Crazy Town yet, there are quite a few days I'm circling the drain, to mix my metaphors..

If it stops the nightmares, it probably won't kill me Surgery 3/8/2015 Mastectomy: Left, Right Dx 3/9/2015, IDC, Left, 1cm, Stage IB, Grade 3, 2/16 nodes, ER-/PR-, HER2- Radiation Therapy Lymph nodes Chemotherapy AC + T (Taxol)
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Jul 27, 2015 03:59PM Jackbirdie wrote:

Come on in, Jen! Plenty of room for more crazies

Katy, age 59 Oncotype dx 30 Dx 12/15/2014, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 12/18/2014 Lymph node removal: Right, Sentinel Surgery 12/18/2014 Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 3/5/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 8/1/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 2/3/2016 Arimidex (anastrozole)
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Jul 27, 2015 05:04PM Tomboy wrote:

Welcome, Littleblueflowers, what a sweet screen name. I almost said scream name.

SlowDeep, now did you mean to call SulaDog 'sludge', or was that auto correct, too?

"I will sit right down, waiting for the gift of sound & vision" David Bowie, Rest in pax, my beloved changeling... Dx 6/8/2012, IDC, Right, 1cm, Stage IIIC, Grade 3, 25/30 nodes, ER+/PR+, HER2+
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Jul 27, 2015 05:06PM littleblueflowers wrote:

Thanks ladies! Your posts are certainly helping me keep perspective 😉

If it stops the nightmares, it probably won't kill me Surgery 3/8/2015 Mastectomy: Left, Right Dx 3/9/2015, IDC, Left, 1cm, Stage IB, Grade 3, 2/16 nodes, ER-/PR-, HER2- Radiation Therapy Lymph nodes Chemotherapy AC + T (Taxol)
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Jul 27, 2015 05:35PM - edited Jul 27, 2015 05:41PM by SlowDeepBreaths

littleblueflowers, Welcome to our thread!! Of course you may join us!! Nice to see another TN girl here. I can see you're a planner!! Good thinking anticipating your crazy. My mom always said it's good to plan ahead!! We will call this "anticipatory crazy." Kind of like anticipatory grief....but different. haha Plus, your diagnosis line says Sept. 2015. Is this "anticipatory diagnosis?" hehe Or, are you all messing with me because I'm so "slow????" This is July, yes?? I hope I'm not losing time AGAIN.

Seriously though, I'm very glad you found us!!! Love, love your name. It sounds so spring like.

I'm curious how JB knew your name was Jen though. I'm looking all over your profile and the only thing remotely close to "jen" is jet fuel only. JB....are you psychic??? That could come in handy for some of us waiting on test results!!

TB, I thought maybe her name changed?? I kind of like the name sludge. I wish I thought of it. I feel like sludge at times!!

Edited for one huge typo.

Dx 4/2016, TN mets to lung. VATS left upper lobe wedge resection. "Fall seven times, stand up eight" Japanese Proverb Dx 7/2013, IDC, Left, 1cm, Grade 2, 0/0 nodes, ER-/PR-, HER2+ (FISH) Dx 7/2013, IDC, Left, 1cm, Grade 2, 0/0 nodes, ER-/PR-, HER2- (FISH)
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Jul 27, 2015 06:02PM littleblueflowers wrote:

Hey slowdeepbreaths

You knOw I never even noticed I had the wrong month in my diagnosis. Jeeze. I blame ativan for that, like I blame it for everything. I was diagnosed in April of this year, finished up chemo last week. The crazy comes and goes for me!

If it stops the nightmares, it probably won't kill me Surgery 3/8/2015 Mastectomy: Left, Right Dx 3/9/2015, IDC, Left, 1cm, Stage IB, Grade 3, 2/16 nodes, ER-/PR-, HER2- Radiation Therapy Lymph nodes Chemotherapy AC + T (Taxol)
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Jul 27, 2015 06:03PM Jackbirdie wrote:

haha- a few of us floating around, making friends on other threads. Littleblue is a fantastic addition. Not psychic. Except I know that pain in my groin is mets. You all can call me Katy.

Katy, age 59 Oncotype dx 30 Dx 12/15/2014, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 12/18/2014 Lymph node removal: Right, Sentinel Surgery 12/18/2014 Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 3/5/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 8/1/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 2/3/2016 Arimidex (anastrozole)
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Jul 27, 2015 06:05PM littleblueflowers wrote:

Hey I got that too! But I had it befor...can't even blame nookie :) Hi Katy!

If it stops the nightmares, it probably won't kill me Surgery 3/8/2015 Mastectomy: Left, Right Dx 3/9/2015, IDC, Left, 1cm, Stage IB, Grade 3, 2/16 nodes, ER-/PR-, HER2- Radiation Therapy Lymph nodes Chemotherapy AC + T (Taxol)
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Jul 27, 2015 07:06PM SlowDeepBreaths wrote:

Thank goodness LBF!! I was getting concerned about my eyesight!!

Katy, Oh darn....I was hoping you could tell the future!!!

I think all Crazy Town girls must have a crazy town emergency kit.

  1. Ativan or a big stiff drink
  2. Flashlight
  3. Mirror
  4. Magnifying glass
  5. Benedryl spray (because most things seem to itch)
  6. More Ativan!!! or.....another stiff drink

Feel free to add to list as needed!!

Dx 4/2016, TN mets to lung. VATS left upper lobe wedge resection. "Fall seven times, stand up eight" Japanese Proverb Dx 7/2013, IDC, Left, 1cm, Grade 2, 0/0 nodes, ER-/PR-, HER2+ (FISH) Dx 7/2013, IDC, Left, 1cm, Grade 2, 0/0 nodes, ER-/PR-, HER2- (FISH)
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Jul 27, 2015 07:12PM queenmomcat wrote:

Mixers. Someone to check that awkward spot on your back.

Dx 5/27/2015, DCIS, Left, 1cm, Stage 0, Grade 2, ER+/PR+, HER2- (IHC) Surgery 7/7/2015 Lumpectomy: Left Radiation Therapy 8/31/2015 Whole-breast: Breast Hormonal Therapy 11/1/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 12/9/2015 Reconstruction (left)
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Jul 27, 2015 07:54PM littleblueflowers wrote:

Baking soda!

And someone to tell me why my newly exposed ribs are lumpier on the right side than the left?

And a searching inventory of all pre diagnosis pains.

Because I have met myself, I can tell that the crazy plane will come in for a landing once I finish radiation. Then I shall go quietly bat-nuts.

If it stops the nightmares, it probably won't kill me Surgery 3/8/2015 Mastectomy: Left, Right Dx 3/9/2015, IDC, Left, 1cm, Stage IB, Grade 3, 2/16 nodes, ER-/PR-, HER2- Radiation Therapy Lymph nodes Chemotherapy AC + T (Taxol)
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Jul 27, 2015 09:51PM - edited Jul 27, 2015 09:57PM by Suladog

Lucy,

About my old group, there was one young woman in her 20's the youngest one of us. She had a double MX and recon and lots of positive nodes... Don't remember if she was ER + and of course no one knew about HER2 back in those days. Anyway, she was as bad as you can imagine. While bald as a billard ball on chemo she met a doctor while at the hospital. They wound up married! They adopted two kids since chemo did to her what it did to me and I always check up on her via Lord Google... Just to see if she's still out there. And yep she is , the kids are likely out of the house by now since it was 25 yrs ago, and they live on the east coast now near the rest of their family , but last time I looked a few months back she was alive and kicking

Tomboy,

Maybe I should change my avatar name to sludge

Dx 6/6/1990, IDC, Left, <1cm, Stage IA, Grade 3, 0/18 nodes, ER-/PR-, HER2- Surgery 7/20/1990 Mastectomy: Left Chemotherapy 8/19/1990 CMF Dx 10/5/2014, IDC, Right, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (FISH) Surgery 10/28/2014 Mastectomy: Right Chemotherapy 1/28/2015 Taxol (paclitaxel) Targeted Therapy 1/29/2015 Herceptin (trastuzumab) Hormonal Therapy 5/30/2015 Arimidex (anastrozole)
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Jul 27, 2015 09:53PM Suladog wrote:

oh yeah and that red thing on the top of my mouth I never bothered to mention here... I was about to call my dentist when I found that it was a small piece of tomato skin

Dx 6/6/1990, IDC, Left, <1cm, Stage IA, Grade 3, 0/18 nodes, ER-/PR-, HER2- Surgery 7/20/1990 Mastectomy: Left Chemotherapy 8/19/1990 CMF Dx 10/5/2014, IDC, Right, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (FISH) Surgery 10/28/2014 Mastectomy: Right Chemotherapy 1/28/2015 Taxol (paclitaxel) Targeted Therapy 1/29/2015 Herceptin (trastuzumab) Hormonal Therapy 5/30/2015 Arimidex (anastrozole)
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Jul 27, 2015 09:54PM - edited Jul 27, 2015 09:55PM by Suladog

Littleblu,

Bat nuts... I love it and ps... I was TN 25 yrs ago

Dx 6/6/1990, IDC, Left, <1cm, Stage IA, Grade 3, 0/18 nodes, ER-/PR-, HER2- Surgery 7/20/1990 Mastectomy: Left Chemotherapy 8/19/1990 CMF Dx 10/5/2014, IDC, Right, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (FISH) Surgery 10/28/2014 Mastectomy: Right Chemotherapy 1/28/2015 Taxol (paclitaxel) Targeted Therapy 1/29/2015 Herceptin (trastuzumab) Hormonal Therapy 5/30/2015 Arimidex (anastrozole)
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Jul 27, 2015 09:56PM Suladog wrote:

we need a damn like button on this thing!!!

Dx 6/6/1990, IDC, Left, <1cm, Stage IA, Grade 3, 0/18 nodes, ER-/PR-, HER2- Surgery 7/20/1990 Mastectomy: Left Chemotherapy 8/19/1990 CMF Dx 10/5/2014, IDC, Right, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (FISH) Surgery 10/28/2014 Mastectomy: Right Chemotherapy 1/28/2015 Taxol (paclitaxel) Targeted Therapy 1/29/2015 Herceptin (trastuzumab) Hormonal Therapy 5/30/2015 Arimidex (anastrozole)
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Jul 27, 2015 10:16PM Tomboy wrote:

Suladog! i love Suladog! I will make every effort to make your name right! It matters to me!

"I will sit right down, waiting for the gift of sound & vision" David Bowie, Rest in pax, my beloved changeling... Dx 6/8/2012, IDC, Right, 1cm, Stage IIIC, Grade 3, 25/30 nodes, ER+/PR+, HER2+
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Jul 27, 2015 10:18PM Tomboy wrote:

Man, your friend was awesomeness!! And married a doc too? Nice!

"I will sit right down, waiting for the gift of sound & vision" David Bowie, Rest in pax, my beloved changeling... Dx 6/8/2012, IDC, Right, 1cm, Stage IIIC, Grade 3, 25/30 nodes, ER+/PR+, HER2+
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Jul 27, 2015 10:19PM Tomboy wrote:

ThumbsUpis

"I will sit right down, waiting for the gift of sound & vision" David Bowie, Rest in pax, my beloved changeling... Dx 6/8/2012, IDC, Right, 1cm, Stage IIIC, Grade 3, 25/30 nodes, ER+/PR+, HER2+
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Jul 27, 2015 10:45PM Suladog wrote:

Tomboy,

Yeah. She did good, she used to say if he loves me with no hair.... He wasn't an MO which I think is a good thing, if I were married to an MO I would be always, "here, feel this! Look at that!" There would be no peace. Since my husband and I work together every day staring at each other across our desk he's used to being shown all sorts of stuff

Dx 6/6/1990, IDC, Left, <1cm, Stage IA, Grade 3, 0/18 nodes, ER-/PR-, HER2- Surgery 7/20/1990 Mastectomy: Left Chemotherapy 8/19/1990 CMF Dx 10/5/2014, IDC, Right, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (FISH) Surgery 10/28/2014 Mastectomy: Right Chemotherapy 1/28/2015 Taxol (paclitaxel) Targeted Therapy 1/29/2015 Herceptin (trastuzumab) Hormonal Therapy 5/30/2015 Arimidex (anastrozole)
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Jul 28, 2015 12:57AM Tomboy wrote:

Good Point!

"I will sit right down, waiting for the gift of sound & vision" David Bowie, Rest in pax, my beloved changeling... Dx 6/8/2012, IDC, Right, 1cm, Stage IIIC, Grade 3, 25/30 nodes, ER+/PR+, HER2+
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Jul 28, 2015 02:46AM IamNancy wrote:

I love reading all your posts -

Loopy

oncotype 25 Dx 11/2012, IDC, 1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+ Surgery 12/10/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Surgery 2/4/2013 Lumpectomy: Right Chemotherapy 2/12/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 5/13/2013 Breast Hormonal Therapy 7/7/2013 Arimidex (anastrozole)
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Jul 28, 2015 03:41AM M0mmyof2 wrote:

One thing that makes me so mad about being in Crazy Town, is my oncologist's insistance that even if there is no need for treatment, she wants me to keep the port in everytime I mention that I might want it out. I feel like saying to her: "i'm sorry, but since when has this become your body? It's not yours, so quit making decisions on what I should do with it! Now make the arrangements for the port to be removed!"

If you value your freedom, thank a servicemember both serving and retired!
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Jul 28, 2015 07:58AM littleblueflowers wrote:

Suladog, 25 years????? Will you be my spirit animal LOL?

If it stops the nightmares, it probably won't kill me Surgery 3/8/2015 Mastectomy: Left, Right Dx 3/9/2015, IDC, Left, 1cm, Stage IB, Grade 3, 2/16 nodes, ER-/PR-, HER2- Radiation Therapy Lymph nodes Chemotherapy AC + T (Taxol)
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Jul 28, 2015 08:41AM Tomboy wrote:

Isn't Suladog great!?! And just think, she's been visiting crazytown for all that time!!! Yoiks!

"I will sit right down, waiting for the gift of sound & vision" David Bowie, Rest in pax, my beloved changeling... Dx 6/8/2012, IDC, Right, 1cm, Stage IIIC, Grade 3, 25/30 nodes, ER+/PR+, HER2+
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Jul 28, 2015 10:16AM - edited Jul 28, 2015 10:17AM by Tomboy

You know, I have always wondered (even before I had it), if cancer was just evolution trying to apply its magic. it kind of makes sense to me, in the same way that when I look at the big headed, big eyed depiction of aliens ,I wonder if they are really us, at some point in the future. Think about it. No muscle mass from lack of exercise, bloating from eating things our grandmothers wouldn't recognize as food, big eyes from staring at screens, be they kindles, computers, phones, movies, tv's, and increasingly, our spaceships, er, cars. It's kinda hard to keep your eyes off that little traveling map, isn't it? The big head I also attribute to our ever increasing intelligence, mmm maybe. The long finger thing due to more and more keyboarding, until William Gibson's 'Neuromancer's "jacking" straight to our brain takes place. Greenish skin tone would probably be the result of eating seaweed, which we are getting a pretty good start on, right? So, in my quest to learn more about my dear friend Beppy's fleshly travails, I came across and am delighted to bring this to you, I do hope you enjoy: http://www.rifters.com/crawl/?p=1896 I am going to go and finish reading it now, and just make sure you have a little something on your stomach first, okay?

"I will sit right down, waiting for the gift of sound & vision" David Bowie, Rest in pax, my beloved changeling... Dx 6/8/2012, IDC, Right, 1cm, Stage IIIC, Grade 3, 25/30 nodes, ER+/PR+, HER2+
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Jul 28, 2015 10:27AM Jackbirdie wrote:

Tomboy. Unfortunately what you said made a lot of sense to me. Yikes

Katy, age 59 Oncotype dx 30 Dx 12/15/2014, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 12/18/2014 Lymph node removal: Right, Sentinel Surgery 12/18/2014 Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 3/5/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 8/1/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 2/3/2016 Arimidex (anastrozole)
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Jul 28, 2015 10:27AM Tomboy wrote:

Oh, yeah, and Mods? If you are reading this, thank you, thank you, THANK YOU!!! For deleting all those deleterious, redundant factoids about each of our diagnosis', and treatments, etcetera!!! I finally noticed last night, and but was just to sleepy to post and thank you. It looks much better now. Funny how good I got at ignoring all of it! When did it actually happen?

"I will sit right down, waiting for the gift of sound & vision" David Bowie, Rest in pax, my beloved changeling... Dx 6/8/2012, IDC, Right, 1cm, Stage IIIC, Grade 3, 25/30 nodes, ER+/PR+, HER2+
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Jul 28, 2015 10:38AM tangandchris wrote:

Hi crazies!

My A1C came back borderline....so that means I've got to crack my whip and get my crazy arse moving. uggg, I'm trying to just view it as continued cancer tx.

anyway, I love this thread and I'm so happy to be a part of it :) lol

My reconstruction with TE's failed...had them removed because of infection. I am still unsure of if or when I will try again. Dx 10/24/2013, IDC, 2cm, Stage IIIA, Grade 2, 6/25 nodes, ER+/PR+, HER2- Surgery 11/23/2013 Lymph node removal: Left; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement Chemotherapy 2/13/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 10/2020, Stage IV, metastasized to other, ER+/PR-, HER2-
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Jul 28, 2015 10:41AM Tomboy wrote:

Tang, I am so glad you found a good home here with us! Crazytown Rocks! So happy you are borderline, and can still do something about it! Let's just promise each other to move more, and watch what we eat a little more! Love you

"I will sit right down, waiting for the gift of sound & vision" David Bowie, Rest in pax, my beloved changeling... Dx 6/8/2012, IDC, Right, 1cm, Stage IIIC, Grade 3, 25/30 nodes, ER+/PR+, HER2+

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