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Topic: What they don’t tell you after breast cancer

Forum: Acknowledging and honoring our Community — Share accomplishments, milestones, goals of community members, family members or yourself. Just finished treatment? Just got married? Watched your child graduate? Ran a big run? Been a huge help to members in our community? Let's honor our members here!

Posted on: Feb 18, 2019 07:10AM - edited Feb 18, 2019 07:13AM by Q4life

Q4life wrote:

It's been 7 months since my last treatment.

A CARIS test to identify the best treatment approach. Chemo to shrink a tumor. Medicinal marijuana and vitamin infusions between treatment. Bilateral mastectomy 2017 without reconstruction. Fuck implants. Then an ooherectomy and surgical menopause in 2018. All in the last two years. No radiation I am in a study. I have a weird gene mutation only 100,000 people have. They don't know if it gives you cancer or helps you to heal from it faster. July 11, 2018 last immunotherapy treatment

I was so determined to move away from disease that I returned back to work pushing past chemo brain, fatigue and joint paint. A torn meniscus but my MsK NYC oncologist said I was ok & in remission. I am not on medication which she urges me to take ASAP. Another surgery to repair it and 6 months of recovery.

Yet the day to day wears on me differently. Feeling geriatric when I work out. Joint paint & stiffness in the morning; usually working out, stretching & a hot shower help. There are joys & challenges in menopause. No period. I can wear what I want. No cramps, bloating or stains to worry about. Yet being dry and no sex drive. I don't think about sex or relationships. No desire to fit anyone's need or desire of me which frees me up to explore what I want and need.

Yet Difficulty releasing weight. Joint pain and need to weight train so my bones don't become frail leading to injury. Still get some nothing hot flashes but they were worst during chemo. All manageable; my new norm.

Chemo brain & cognitive fogginess. Affects my ability to be efficient and self reliant at work. My life is made up of lists I check off.

My scars are minimal and working out has helped me see my gains & how strong my body is. Accept my resiliency. I opted for a FTM plastic surgeon. I told her no dog ears & don't do me any favors for later. I don't want implants. I want to be as flat as possible and rebuild my chest with exercise. The surgeon removing the tumor and the healthy breast left more tissue on my left side. I have a mini boob that bothers me but it's just fat that I know I can melt off. I saw the hack job other women had and in my research made sure to use language to indicate exactly what I wanted from my surgeons. All in all it could have been worst. I just look like a flat chested pear shaped woman. Androgynous femme. Being queer helped me to use transgendered language to communicate how I wanted to look. FTM top surgery to become a flattopper. Flat closure thank you for fighting for my rights before I even knew I needed you to.

Thoughts precede emotion so when I get teared up I know its a limiting belief I am allowing to surface so that I can heal it. I don't hold onto the thought or indulge in self pity. I don't seem to dwell in sadness for extended amounts of time. I always find a way to cheer myself up through laughter. At first seeing the scars was jarring. It changes your silhouette so all I saw was a scooped out chest and a pot belly, cellulite & a healing body which was resilient. I saw the negative. I wanted to feel sorry for myself despite the strange compliments, people that were drawn to me or the encounters I had. Who would want me now?

I started researching fetishes with scars and amputation. Freaks and who were drawn to them sexually. How there are norms and freaks; through this experience I had crossed over into a realm I occupied as an artist. I was always different. My perspectives and understanding were nonadjacent to those around me. Yet this was not a trip into the different but a residency. This was a life sentence.

A friend once asked over dinner. Why are you still single? You are attractive, resilient, funny AF, financially stable, a professional, etc. I don't have a sex drive & I would want the person to be monogamous. I think that would be selfish. I didn't think of myself. That I would need a partner who saw me & valued my experience. Was understanding as to my medical needs. Someone who would take their time enticing me into seduction. Would be mature enough to be empathetic. Maybe in the medical field. Maybe a survivor as well. Also I'm not looking to be anyone 's fucking nurse nor am I taking applications for one. I love my freedom and independence. That my value is not tied to the attention and focus of others . I exist for myself.

I started to notice I had no patience for whiners of the norm realm. I couldn't pretend to relate or care. I existed in a place of constantly engaging with my mortality & dancing with death. Aware of my limited time. Feeling I got dressed for this shit. My time is valuable now and obligations seem a joke; if I show up I value both you and myself so come correct. Which turns others off, yet I am not responsible for the feelings of others. Cancer forces you to be at an Oprah level of authenticity that others abhor.

Feeling feminine is subjective until I reclaimed it. I started to utilize props such as makeup, fashion and my body to test my sexual presence. I treated each hair length as an opportunity to experience and experiment with how to use my creativity to manipulate my flesh canvass. From painting on eyebrows with colorful waterproof eyeliner pencils; teal, silver & pink were my favorites. A bold lip and bald head; fuck the wig they were itchy. I wore sculptural hats. I dressed up for chemo. Reading an article about women who wear red lipstick after surgery and how they thrive better than women who don't. It's your canvass what are you painting on it. Fashion helped me to be distracted from pain, discomfort and self pity. I no longer seek to feel validated by the gaze of another. I dress this way for myself. My pleasure. My enjoyment.

I started to realise that I had based my self worth on being productive & enticing a sexual partner. I had to rework my self worth. Who I had to become to survive this experience is not who I was when I was diagnosed. At times I felt unmotivated to clean or work at the level that had given me that weird sense of pride. I now ask myself do I even like you? Are you worth the energy & effort? Because now I conserve my attention, focus & time. Peer pressure doesn't work on me.

My life goals changed.

My perspective changed.

My temperament even changed.

As The article One year as a survivor states:I pushed myself and tore my meniscus; I thought this is my new normal; pain. I made the injury worst by thinking fuck is it bone/knee cancer. Bone cancer; it spread anxiety. The x ray was clear. Having cancer is like robbing a bank and getting away but always looking over your shoulder waiting to get found out. That anxiety is crippling. I now face things head on. No matter what happens I will find a way to adapt & handle it.

It's also physiologically healing to see images of women like me who opted for no reconstruction. Each selfie is like hair length an opportunity to experiment and explore my beingness at this stage of my growth. I get to set an example and be a role model to myself. Show myself an alternative to success that doesn't exist for me yet.

Stage 3 breast cancer forced me to reassess and make changes. Implementation of a plan to curate who I will become next. Stay tuned.


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Feb 18, 2019 07:24AM 70charger wrote:

YOU ROCK! Well said. Can't wait for more.

Dx 7/11/2013, IDC, 2cm, Stage I, Grade 3, 0/6 nodes, ER+/PR+, HER2- Surgery 8/9/2013 Lumpectomy: Right Surgery 8/9/2013 Lymph node removal: Right, Sentinel Dx 8/21/2013, DCIS, 2cm, Grade 3 Chemotherapy 9/11/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 12/9/2013 Breast Hormonal Therapy 12/13/2013 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy Arimidex (anastrozole)
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Feb 18, 2019 07:27AM kber wrote:

Love this line!

"Having cancer is like robbing a bank and getting away but always looking over your shoulder waiting to get found out."

I'm in full fledged fight or flight mode right now - still throwing everything we can think of at this.  

Thanks you for sharing your path on what might come next.  

I don't want to think about how this could change me.  I'm not ready for that.  And I think that's ok.  I'm in a fight for my life right now.  I'll take stock later after I come up for air.

Dx 11/2018, IDC, Left, 5cm, Stage IIB, ER-/PR-, HER2- Chemotherapy 12/6/2018 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Surgery 5/27/2019 Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 7/16/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Feb 18, 2019 07:39AM LoveFromPhilly wrote:

Q - thank you for this post. I can relate sooooo much to pretty much every single word you wrote. Right there with ya friend minus the surgery and chemo. However, because stage 4 and no surgery, I am left with a boob that looks distorted, nipple inverted permanently, and from the side looks like a rippling wave. Tumor has shrunk completely thanks to Ibrance and my “innumerable” bone Mets in my entire spine, sternum, pelvis, shoulder blades, etc, are now “artifacts.” Hardened fossilized bone that I have no clue whether or not they will break and turn to dust easily with every cardio kickboxing and Zumba class that I push myself through.

Menopause, check!

Sex drive gone, check!

“Oprah level of authenticity” (love this!), check!

Researching fetishes, check! (Wasn’t able to get very far in this realm because the idea of labeling myself as the “freak” got to my head).

Looking for survivor partners but not having any desire to be their nurse or mommy - absolutely. Can barely exist with dating people in good health because I’ll still need the energy to simply care deeply for them and the energy needed to build a relationship and the effort is just not there. I don’t have the energy to be present for someone else’s not worked on baggage and patterns.

Ibrance/hormonal therapy brain: full on!

“New normal” - a phrase I absolutely loathe for some reason, maybe because it’s true and it pisses me off and saddens me?

Laughter and loved ones keep me sane. The cliche idea of beauty in the mundane is working for me. Taking art, acting, dancing classes helps me try and dig more deeply into who I am and who am I becoming every single new day is a container for my sanity.

Thank you for your post. It really struck me. I really feel like I can relate so much ♥️♥️

💫 🧚🏾‍♀️ 💫 🧚🏾‍♀️ 💫 🧚🏽‍♂️ 💫 🧚🏽‍♂️ 💫 🧚🏾‍♀️ 💫 🧚🏾‍♀️ 💫 🧚🏾‍♀️ 💫 🧚🏾‍♀️ Dx 3/25/2017, IDC, Right, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- (IHC) Hormonal Therapy 4/5/2017 Femara (letrozole) Targeted Therapy Ibrance (palbociclib)
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Feb 18, 2019 08:31AM santabarbarian wrote:

Love the red lipstick factoid! I was at the MAC store two days ago looking for a red, because my hair color is so different, nearly black w/ a bit of grey, and I thought, hmmm, maybe I can finally pull off a red! But I did not find the perfect one... yet. I do have a good magenta...

I am guessing wearing a bold color lip probably correlates with an overall self-and-life affirming attitude and not being afraid to be noticed or to participate.

pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/11/2019 Whole-breast: Breast, Lymph nodes
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Feb 18, 2019 09:31AM - edited Feb 18, 2019 10:25AM by SuQu31

I loved this - thank you so much for sharing. Love the red lipstick fact too! I told a group of my close friends that I would be wearing red lipstick in my mind when they wheeled me to surgery, sans makeup. I've always loved red lipstick. For me, it's an attitude - bold, unafraid and more than a little bit sassy! Plus, it never fails to cheer me up.

santabarbarian, it's hard to find the perfect red, so when you do, stock up, because invariably they will change the shade or formula on you!

Let me add this: I do not mean to minimize the power of this post - and the power of our experiences - by appearing to focus only on red lipstick. Of course we are more than our outward appearances - way more. And we absolutely are way more than the breast cancer that unites us on this site.

Re-excision for close anterior margin 10 days after BMX. Dx 10/31/2018, DCIS, Left, Stage 0, Grade 3, ER-/PR- Dx 12/10/2018, DCIS, Left, 2cm, Stage 0, Grade 3, 0/3 nodes, ER-/PR- Surgery 12/10/2018 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Latissimus dorsi flap; Reconstruction (right): Latissimus dorsi flap Surgery 12/20/2018 Surgery 9/13/2019 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant
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Feb 18, 2019 07:47PM - edited Feb 18, 2019 07:51PM by Q4life

Greetings SuQu,

Thank you for your post. I'm glad my words connected with you.

Never apologize for who you need to become to overcome this. That's what I mean by it will shift you. Your bullshit meter, social peer pressure influence, motivation to engage with others, norm's daily challenges and what you value will be drastically different. There will be times that you will be with yourself and have to have self care strategies and ways to adapt to this situation.

You are learning who you can be. Cancer always filters people who are superficial. Trust and believe no offense taken. The article by a breast surgeon was his observation on how some women who wore the lipstick for themselves outlived cancer in ways that surprised him.

The red lipstick is a choice on how you adapt. Cancer takes the physical attributes that society values. Taking the outer gaze and using props to experiment with yourself is the point. What can you use to help you love yourself? Take back your life? Be strong? Not for someone else its for you. That decision says fuck it I am doing this for me. It becomes more than a pink ribbon as a symbol. Like a make over or wearing something that is not you and you see the potential that you didn't see before.

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Feb 18, 2019 08:00PM Q4life wrote:

Greetings Santabarbarian,

Call it a fuck you red. I love limecrime and jeffreestar liquid lip stick that is long lasting. I wear a darker shade of red on my top lip and a brighter one on the lower lip. Have mac help you find that perfect shade.

I used to dye my hair. Now my hair is straight. It used to be curly. I wore it as an undercut. Now I have a #15 that my barber gives me. I embrace it because I am lazy. 🤔🤭🤫🤨🧐

I say use this time to get out of your style comfort zone. Ironic how many models are bald. I wish hospitals had make overs for women that really help you see yourself as beautiful and sexy for yourself. Attraction is an attitude not validation from others.

Don't ask yourself, ”Will they like me?” ask yourself, ”Do I even Like them? Does this reflect my values? Honor all I have done to help heal me? Is this worth my time?”

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Feb 18, 2019 08:33PM Q4life wrote:

Greetings lovefromphilly,

I'm sending you mad love and light. When I meditate I imagine a white light and make it pass through my body. I send my body and the cancer love. Cancer is me. It is a rogue copy from a damaged genetic copier. So instead of hating cancer I saw it as not why me but what is this teaching me. Cancer is like a finger print. Each experience is individualized.

I admire your strength. How you persevere despite cancer diagnosis. You are out living cancer if you think about it. I do flotation therapy for inflammation maybe that can help with your bones and any muscle or joint pain. There is also magnesium gel you can use for soreness. Do you get PT or do weight training for your bone strength?

This experience has taught me that I love humor and comedy. I love to dance. Eat good food that is healthy. To follow my gut. To slow down. To be brutally honest and be clear as to what I like and what I don’t. Authentic connections. Having adventures. Sharing time with those I value and value me.

Freak. It's just a word like alternative approach to success. It means embracing being different. Being ok with your body and being unapologetic when you share it with someone else. I am learning that. Sexy and attraction is an attitude that is all about bringing yourself back to mind work that you are sensual, beautiful and can enjoy pleasure. I don't want to be someone’s fetish but it helped me to shift the belief of who would want me now.

So I embrace my freak. That doesn't mean I'm going on dates or having one night stands. There is nothing wrong with that by the way. For me I had a very high sex drive but now I can go months without sex or thinking of engaging with someone emotionally or physically. I know what I want and in this grass is greener but it's really just a filter dating trend; I require a lover who is mature and wants a relationship not to look over my shoulder for the next novelty. I want to build a future with someone but if I am with myself and single I am still building. I hear you about the energy to care, endure people’s process, patterns and baggage. When we engage with norms we force them into rapid growth that is either embraced or resisted. I no longer feel bad about rejection its a redirection.

New normal. Yeah like the TI song it feels like the old me is dead and gone. So this is me.2 I still surprise myself the ways handle things or adapt. Same for me. I am looking for a tribe of outlivers who are mavericks. Being the exception to the cancer rule. Think about it years ago we wouldn't be here bit we defied odds.

Read radical remission. David Goggins Can't hurt me. Surround yourself with inspiration. I will meditate and imagine you surrounded by light. Glowing bright.

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Feb 18, 2019 08:35PM - edited Feb 18, 2019 08:44PM by Q4life

Thanks 70charger. You just see a reflection of your inner beauty. I am privileged to be on this forum with amazing individuals who are engaging life from a place of presence and authenticity

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Feb 19, 2019 12:18AM blah333 wrote:

Nice..... but I don't think you will be able to "melt" the left over fat from your mastectomy. It's one of those "trouble areas" even if you lose 40 lbs, if you have a fat bump it will probably be there. I have a half moon of fat under one incision, it's fucking annoying. I am going to wait until "technology" or whatever improves and hopefully get something (Kybella?) injected into it so it shrinks. Kybella is this acid (like stomach acid I think) that dissolves fat, they usually use it under the chin, which is an area people have a hard time "losing" weight from. Some people use it off label to help with slight adjustments for breast surgeries (though usually not breast cancer surgery - other augmentations).

I know what you mean by having low tolerance for whining. A friend sent out a mass email stating that she had PTSD from Trump being president and I was like -------- uh ok cool (you baby), I haven't talked to you in 3 years I've had cancer and need biopsies to see if it has returned but you're struggling because of the news, cool. We all are lol

Age 35 at diagnosis Dx 9/2017, DCIS, Left, 6cm+, Stage 0, 0/2 nodes, ER+/PR+ Surgery 11/30/2017 Mastectomy: Left, Right
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Feb 19, 2019 04:59AM santabarbarian wrote:


I visualized a lot during my chemo. I talked to my breast (my good, trusty, beloved breast who's fed my kids so well) and encouraged it and praised it for fighting. And to my Cancer, I had the same attitude, it was just cells of my own body going down the wrong road....I pointed out that if it ate me, we'd both die, but if it allowed me to 'eat' it, then we'd both be alive-- because it would be recycled into energy in my body. I asked it to let be willing to transform, and live, instead of keep going, and (ultimately) die.

pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/11/2019 Whole-breast: Breast, Lymph nodes
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Feb 19, 2019 05:31AM - edited Feb 19, 2019 05:32AM by Shellsatthebeach

The most freeing moment of my life was when I was running in the rain to get into the grocery store and my synthetic wig got soaked and looked like shit. My husband told me to just take the damn thing off. I did and walked around that store like I owned it. Yep this is me! If only I was brave enough (pain wise) to have tattoos on my bald head. All norms of what society expects from a women my age gone. That is the new me. Also having a naked face can be a statement in itself. Any kind of nakedness is pure vulnerability including no makeup, no boobs be able to bare it with no apologies is freeing and bold too! Fuck it. This is me and only the genuine are attracted to the real me. All fake friends and superficial people gone. Too little time to waste with them.

Dx 3/2017, IDC, Left, 3cm, Stage IIIB, Grade 2, ER+, HER2- Surgery 8/28/2017 Lymph node removal; Mastectomy: Left Dx 9/15/2017, DCIS/IDC, Left, Stage IIIB, Grade 3, 6/10 nodes, ER+/PR+, HER2+ Targeted Therapy 9/24/2017 Herceptin (trastuzumab) Radiation Therapy 10/17/2017 Breast, Lymph nodes, Chest wall Chemotherapy AC + T (Taxotere) Targeted Therapy Perjeta (pertuzumab)
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Feb 19, 2019 05:35AM - edited Feb 19, 2019 05:35AM by santabarbarian

BTW, Shells, who else saw the grammy's and noticed ow GORGEOUS Alicia Keys looked, glowing and natural w no makeup. In a headscarf! And small breasted.

All those heavily made up D cup girls on stage..... and there she was just being herself and looking incredible.

pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/11/2019 Whole-breast: Breast, Lymph nodes
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Feb 19, 2019 06:28AM Shellsatthebeach wrote:

I'll have to check out pics. That makes me like her all the more! She wasn't afraid to just be herself in an environment of ridiculously high expectations.

Dx 3/2017, IDC, Left, 3cm, Stage IIIB, Grade 2, ER+, HER2- Surgery 8/28/2017 Lymph node removal; Mastectomy: Left Dx 9/15/2017, DCIS/IDC, Left, Stage IIIB, Grade 3, 6/10 nodes, ER+/PR+, HER2+ Targeted Therapy 9/24/2017 Herceptin (trastuzumab) Radiation Therapy 10/17/2017 Breast, Lymph nodes, Chest wall Chemotherapy AC + T (Taxotere) Targeted Therapy Perjeta (pertuzumab)
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Feb 19, 2019 08:00AM couragement wrote:



May we all be well Dx 5/11/2016, IDC, Right, 2cm, Stage IIB, Grade 2, 2/24 nodes, ER+/PR+, HER2+ (FISH) Dx 6/10/2016, IDC, Left, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Targeted Therapy 8/16/2016 Herceptin (trastuzumab) Chemotherapy 10/15/2016 Gemzar (gemcitabine) Surgery 2/24/2017 Lymph node removal: Left, Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 6/6/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Targeted Therapy Perjeta (pertuzumab)
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Feb 19, 2019 08:07AM VL22 wrote:

Santabarbarian - your post about visualizing during chemo and talking to your breast and your Cancer is really wonderful. It just made me feel lighter to read it. Thank you.

Dx 5/5/2017, IDC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 6/15/2017 Lumpectomy: Right; Lymph node removal: Sentinel Dx 6/23/2017, IDC, Right, 1cm, Stage IB, Grade 3, 1/2 nodes, ER-/PR-, HER2- Chemotherapy 8/10/2017 AC + T (Taxol) Radiation Therapy 1/11/2018 Whole-breast: Breast Hormonal Therapy 3/11/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 19, 2019 08:18PM wallan wrote:

This is a very inspiring post. Thanks so much.

With my second bout of BC, I have been flatlined. No motivation. No sex drive. I am re inventing myself. I don't have tolerance for BS from others. I had a fellow worker tell me at work today to "cope better". I just laughed to myself. Its because I don't want to deal with BS anymore. And my job is not the whole world anymore. In fact, I am thinking of quitting and finding something really meaningful, which gives me purpose and fulfillment.

So happy that others are going thru same thing as me -- or similar anyways. I am so inspired by this. Thank you, thank you


Dx 3/29/2004, IDC, Right, 6cm+, Stage IIIA, Grade 3, 2/18 nodes, ER+/PR+, HER2- Surgery 3/31/2004 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Chemotherapy 6/1/2004 AC + T (Taxol) Radiation Therapy 12/1/2004 Whole-breast: Breast, Lymph nodes, Chest wall Dx 1/25/2017, LCIS/DCIS/ILC/IDC/IDC: Mucinous/IDC: Cribriform, Left, <1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 3/8/2017 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Fat grafting Hormonal Therapy Aromasin (exemestane), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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