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.

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

Posted on: Feb 18, 2019 10:10AM - edited Feb 18, 2019 10:13AM 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.

Q

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Feb 19, 2019 07:59AM santabarbarian wrote:

Q4Life,

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- Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy; Lumpectomy (Left) Radiation Therapy 2/10/2019 Whole breast: Breast, Lymph nodes
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Feb 19, 2019 08:31AM - edited Feb 19, 2019 08:32AM 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 etc....to 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 08:35AM - edited Feb 19, 2019 08:35AM 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- Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy; Lumpectomy (Left) Radiation Therapy 2/10/2019 Whole breast: Breast, Lymph nodes
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Feb 19, 2019 09:28AM 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 11:00AM couragement wrote:

Q4life,

WORD!

May we all be well Dx 5/11/2016, IDC, Right, 2cm, Stage IIB, Grade 2, 2/24 nodes, ER+/PR+, HER2+, 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 11:07AM 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; Lumpectomy (Right); Lymph node removal 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 11:18PM 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

wallan

Dx 3/29/2004, IDC, Right, 6cm+, Stage IIIA, Grade 3, 2/18 nodes, ER+/PR+, HER2- Surgery 3/31/2004 Lymph node removal; Lymph node removal (Right): Underarm/Axillary; Mastectomy; 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; Mastectomy; Mastectomy (Left); Reconstruction (Left): Tissue Expander; Reconstruction (Right): Fat grafting Hormonal Therapy Aromasin (exemestane), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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