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Topic: You've got to see this AGT video, Stage iv Sisters!

Forum: Stage IV/Metastatic Breast Cancer ONLY —

Please respect that this forum is for members with stage IV/metastatic breast cancer only. There is a separate forum for caregivers and friends: Caring for Someone with Stage 4 or Mets.

Posted on: Jun 9, 2021 04:40PM - edited Jun 9, 2021 11:29PM by ShetlandPony

ShetlandPony wrote:

When she stood on stage, beautiful and skinny, with uber-short hair, I knew she was one of us. Her original song "It's Ok" is amazing, and so is her voice. Be sure you watch the interview part, too. When someone asked her, 'How are you now?" I wondered how in the world she would answer. She matter-of-factly told them, "I have some cancer in my lungs, spine, and liver." She also said, "You can't wait until life isn't hard any more before you decide to be happy." Her name is Jane but her stage name is Nightbirde. She is thirty years old. America's Got Talent 2021. Thank you, Jane, for making us less invisible, and for sharing from your heart.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Jun 9, 2021 05:05PM SF-Cakes wrote:

I'm so glad you posted this, I just watched it twice. She's super talented and beautiful. Wow. I needed to watch this right now!

Dx 6/2020, ILC, Left, 6cm+, Stage IIB, Grade 3, 2/4 nodes, ER+/PR-, HER2- Surgery 7/1/2020 Mastectomy: Left Chemotherapy 8/4/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 11/3/2020 Chest wall Dx 1/2021, ILC, Left, Stage IV, metastasized to bone, ER+/PR-, HER2- Radiation Therapy 2/10/2021 External: Bone Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib)
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Jun 9, 2021 05:14PM - edited Jun 10, 2021 09:37AM by Olma61

Yes! Came across her on Instagram and saw the quote in your post, will watch the whole video. Love her spirit.

10/30/2017 Xgeva for bone mets 5/31/2018 Taxol finished! "If one just keeps on walking, everything will be all right” - Kierkegaard Dx 8/3/2017, IDC, Right, 2cm, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 10/28/2017 Perjeta (pertuzumab) Targeted Therapy 10/28/2017 Herceptin (trastuzumab) Chemotherapy 10/30/2017 Taxol (paclitaxel) Hormonal Therapy 5/14/2018 Arimidex (anastrozole) Radiation Therapy 5/30/2019 External: Bone
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Jun 9, 2021 05:40PM DivineMrsM wrote:

I saw her last night and was bowled over. She’s from Zanesville Ohio which is less than two hours from me. I was so impressed with her, and I am not the type to give praise to someone just because they are dealing with cancer or any other kind of personal challenge. And what she says about being happy even when life is hard.....yes, yes, yes! Then Simon took the performance over the top. It was wonderful.

found lump 12-22-10—ilc—er+/pr+/her2—stage iv bone mets—chemo~lumpectomy~radiation~arimidex—March 2019-ibrance/aromasin* —Sept 2019-verzenio* —March 2020-xeloda*
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Jun 9, 2021 06:20PM Simone80 wrote:

I just watched this. She is amazing. Thanks for posting this.

Dx 7/2001, IDC, Right, 1cm, Stage IIIA, Grade 3, 7/13 nodes, ER+/PR+, HER2- Dx 1/2019, IDC, 1cm, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)
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Jun 9, 2021 11:52PM Meja wrote:


Wow - a strong woman. She was fantastic, and what she said: 'You can't wait until life isn't hard any more before you decide to be happy' ❤️.

Thanks for posting.

Dx 12/10/2015, IDC, Right, 3cm, Stage IIB, Grade 1, 2/15 nodes, ER+, HER2+ Dx 1/11/2016, Paget's, Right, <1cm, Stage IIB, Grade 1, 2/15 nodes, ER-, HER2+ Surgery 1/11/2016 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Dx 4/6/2018, Stage IV, metastasized to bone, ER+, HER2+ Targeted Therapy 10/30/2018 Kadcyla (T-DM1, ado-trastuzumab) Targeted Therapy 8/7/2019 Herceptin (trastuzumab) Chemotherapy 9/19/2019 Xeloda (capecitabine) Hormonal Therapy 5/27/2020 Faslodex (fulvestrant) Targeted Therapy Perjeta (pertuzumab) Chemotherapy Navelbine (vinorelbine) Targeted Therapy Herceptin (trastuzumab) Radiation Therapy Whole-breast: Lymph nodes, Chest wall Chemotherapy Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxol (paclitaxel)
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Jun 10, 2021 05:34AM Chicagoan wrote:

Thanks for posting. Amazing to feel represented on TV!

Dx 9/21/2016, IDC, Left, Stage IV, metastasized to bone, Grade 1, ER+/PR+, HER2- Radiation Therapy 9/27/2016 Hormonal Therapy 10/5/2016 Femara (letrozole) Targeted Therapy 10/27/2016 Ibrance (palbociclib)
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Jun 10, 2021 09:00AM moth wrote:

So I'm the only one who didn't like all the hoopla & definitely do not like the 'inspirational' quote and all the wow isn't she wonderful for being positive.

I just detest how nobody wants to gritty reality of despair and grief and weariness and pain and absolute misery of a very very premature death that is stage 4. I don't feel seen at.all.

Just once I want a public figure to say "hey, I did this (whatever big project) but also, I have this horrible thing and it is awful, truly truly awful and tragic and sad" instead of feeding us chicken soup for the soul motivational kitten posters about being happy.

I am not happy about any of this.


I take weekends off

Initial dx at 50. Seriously???? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: https://nevertellmetheodds2017.tumblr.com/

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/13/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/18/2020 Tecentriq (atezolizumab) Chemotherapy 11/25/2020 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 12/8/2020 External Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Hormonal Therapy 12/15/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/2/2021 External: Bone
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Jun 10, 2021 09:31AM - edited Jun 10, 2021 10:18AM by RhosgobelRabbit

moth, you are not alone. Tho like you i feel alone sometimes dealing with this disease because of how i feel about it - how its perceived or how people want it to be perceived, It takes away the scariness and the reality when its presented this way - the way the show presented it - not her.

I liked her, i thought her voice was beautiful but...

none of this is okay...it's not okay.

Mets @ Rads planning. Mets to Pelvis, Femurs, Shoulders, Ribs, T. Spine, L. Spine, Sternum, Sacrum/SI Joints. MyRisk neg. KEAP1 "Courage of the heart is very rare, there's a power when its there" 37yrs old @ IV DX. lifeandirises.home.blog/ Dx 7/30/2018, IDC, Right, 4cm, Stage IIB, Grade 2, ER+/PR+, HER2- Chemotherapy 9/26/2018 AC + T (Taxol) Hormonal Therapy 9/26/2018 Zoladex (goserelin) Dx 4/19/2019, IDC, Right, 3cm, Stage IIB, Grade 2, 5/16 nodes, ER+/PR+, HER2- (IHC) Surgery 4/19/2019 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Hormonal Therapy 5/13/2019 Zoladex (goserelin) Dx 5/17/2019, IDC, Right, Stage IV, metastasized to bone, ER+/PR+, HER2- (IHC) Surgery 10/1/2019 Prophylactic ovary removal Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Aromasin (exemestane)
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Jun 10, 2021 10:06AM candy-678 wrote:

I am not a follower of "America's Got Talent". Though I know that some big names in music got their start on shows like this, and the old show "Star Search", or "American Idol". I watched the YouTube video that we are speaking of here. I liked that she quietly said that she had "some cancer in the lungs, spine and liver". She was not flaunting the MBC. She was humble about it and seemed like she wanted that to be not in the limelight. That she wanted to sing and have this opportunity. I commend her. And.... it does put MBC out there. That there are women quietly and strongly dealing with this disease.

I applaude her.

Found mets on CT for unrelated issue. I only had 2 treatments with IV chemo for the Stage II, then found Stage 4 and switched to hormone therapy/targeted therapy. I consider myself de novo. Also using Xgeva injections for bone mets Dx 6/2017, ILC/IDC, Left, 3cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Dx 9/2017, ILC/IDC, Stage IV, metastasized to bone/liver, 0/1 nodes, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole), Zoladex (goserelin) Chemotherapy AC Surgery Lymph node removal: Sentinel; Mastectomy: Left
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Jun 10, 2021 11:35AM - edited Jun 10, 2021 11:59AM by ShetlandPony

I figured someone would post to say what moth said. Moth, you make good points, and your anger is valid, natural, and shared. I thought about that before making this thread. I agree that this clip leaves a lot out and does not fully educate people. And I know that a beautiful young woman is not the typical bc patient. But I think it is a step forward to simply make people aware that breast cancer* is not always curable, and that people live with cancer and suffer hard cancer treatment, and then die before their time in spite of it. To my mind, it is obvious, looking at a thirty-year-old woman who is that thin and says she has a 2% chance of surviving, that something is very not ok, even if she is able to be on stage singing. I do not think that the public who watched her thought her situation is actually ok. The way she repeats that phrase in the song, I see it as someone trying to convince herself of it, and to comfort those around her. Her fierce bravery makes me cry because she knows very well she is in lot of trouble. I also like how she communicated that she is not defined by having cancer ("the bad things that happen to me"); it is not her identity. I know I have had times when I have felt I was seen primarily as the one with cancer, and I did not like that at all. I want people to not write us off and leave us out. I appreciate that, as candy said, she did not seem to want to emphasize the cancer thing. Rather, by saying in her song that we are all somewhat lost, she pointed out our shared human predicament. As is often said here on BCO, everyone is mortal but not everyone has had to really face that fact (let alone face it way too young), but it can happen to anyone at any time. In any case, the golden buzzer was deserved for her beautiful voice and authentic performance. It was not a pity buzzer in my opinion. So "one of us" got a golden buzzer from Simon. So, overall I thought the video was worth mentioning here. And for folks who disagree with that, I will say your reaction is absolutely valid, too, and I appreciate your contributions to our discussion.

*(I did a little Internet research, and it is breast cancer that she has. I wish she would have stated that.)

Edited to say that my DH pointed out that the lyrics say, "It's ok if you're lost". I take that to mean, among other things, don't feel bad that you are not always positive.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Jun 10, 2021 12:14PM Tinkerbell107 wrote:

I’m not a follower of this show. I did listen to the video and read a few remarks about this young lady. It’s taken me some time to recognize my opinions are now through someone with MBC rather then my old self. If I didn’t have cancer I would say Bravo and commend her on following the dream. I still feel this way but this saddens me as well. I don’t want to generalize but most folks won’t read into like what the heck is this 2% survival come from??! Thanks for sharing this video for its something that would of been overlooked but it’s a reminder how precious and fragile life is on Daily basis

Dx 8/23/2019, IDC, Left, 2cm, Stage IV, metastasized to bone, Grade 3, 5/6 nodes, ER+/PR+, HER2-
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Jun 10, 2021 12:38PM - edited Jun 10, 2021 01:42PM by RhosgobelRabbit

Shetland, that was a really good follow up and i agree with much of what you said. Thank you :)

I keep going back and forth on this. Perhaps each of us sees a bit of ourselves in her. The ones who are doing well see how much they have overcome, those who have been struggling or having a hard time of things are reminded how rough the road is. Perhaps we all are most reminded of what was. MBC changed everything.

Mets @ Rads planning. Mets to Pelvis, Femurs, Shoulders, Ribs, T. Spine, L. Spine, Sternum, Sacrum/SI Joints. MyRisk neg. KEAP1 "Courage of the heart is very rare, there's a power when its there" 37yrs old @ IV DX. lifeandirises.home.blog/ Dx 7/30/2018, IDC, Right, 4cm, Stage IIB, Grade 2, ER+/PR+, HER2- Chemotherapy 9/26/2018 AC + T (Taxol) Hormonal Therapy 9/26/2018 Zoladex (goserelin) Dx 4/19/2019, IDC, Right, 3cm, Stage IIB, Grade 2, 5/16 nodes, ER+/PR+, HER2- (IHC) Surgery 4/19/2019 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Hormonal Therapy 5/13/2019 Zoladex (goserelin) Dx 5/17/2019, IDC, Right, Stage IV, metastasized to bone, ER+/PR+, HER2- (IHC) Surgery 10/1/2019 Prophylactic ovary removal Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Aromasin (exemestane)
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Jun 10, 2021 12:54PM Olma61 wrote:

I went to watch her AGT segment on YouTube. After it, this video of an interview with Nightbirde played automatically:

https://youtu.be/rKKn1gE5Yqw

In it, she spoke of difficulty breathing due to lung tumors and how she worried whether she’d be able to sing when it was time to appear on the show - she did address some of the difficulty with this disease. That vid shows more than 21,000 views, so that message did reach a good number of people. I’m sure she is speaking on other platforms as well.

She truly does have talent, her performance deserved every piece of glitter that was thrown regardless of her cancer struggle. I am happy she is getting the acclaim for this and that a young woman with a horrible disease got to experience and fulfill one of her dreams.

Yes, Shetland, I alsopicked up the “It’s okay to be lost sometimes” line in her song when I listened. I believe she wrote the song, too.

10/30/2017 Xgeva for bone mets 5/31/2018 Taxol finished! "If one just keeps on walking, everything will be all right” - Kierkegaard Dx 8/3/2017, IDC, Right, 2cm, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 10/28/2017 Perjeta (pertuzumab) Targeted Therapy 10/28/2017 Herceptin (trastuzumab) Chemotherapy 10/30/2017 Taxol (paclitaxel) Hormonal Therapy 5/14/2018 Arimidex (anastrozole) Radiation Therapy 5/30/2019 External: Bone
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Jun 10, 2021 02:02PM Cure-ious wrote:

SP- Thanks for pointing out this video!! She exemplifies why none of this is OK, not for her and not for anyone. When will Biden and the whole NIH stand up and announce massive funding and restructuring of clinical trials to push forward much harder on cancer. We are closer than ever to breakthroughs in some areas, but business as usual isn't going to get us there...

Dx 10/2003, IDC, Stage IIB, ER+/PR+, HER2- Dx 7/2015, Stage IV, metastasized to bone, ER+/PR-, HER2-
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Jun 10, 2021 02:45PM Sadiesservant wrote:

Thank you for sharing SP.

I too understand some of the anger but believe this beautiful young woman deserves this opportunity to shine (and the golden buzzer - regardless of the story she has a beautiful voice, amazing presence and a gift with composing). I shed tears watching and listening to the lyrics as throughout it was clear that she and all of us know it is not okay. I haven't watched all of the interview but noted that she says she is not trying to be come across as a hero but her attitude completely resonates with me. I get not looking back, just continuing to go forward, not being unrealistic but not losing hope as well. And you know, I actually think we are a pretty tough bunch when it comes right down to it. On more than one occasion I have rolled my eyes at someone taking days off work, complaining about a stomach ache, cold, whatever and thought seriously? good grief... if you had to go through what I go through on a regular basis...

I does raise awareness of stage IV cancer, reminds people that although she may look pretty darn good she has cancer in multiple locations. People see a young, vibrant, beautiful woman who will not survive this.

Dx 4/2001, IDC, Right, 1cm, Stage IIA, Grade 3, 1/10 nodes, ER+ Surgery 5/10/2001 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Chemotherapy 6/7/2001 CEF Radiation Therapy 12/17/2001 Whole-breast: Breast Hormonal Therapy 12/20/2001 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/2/2007 Femara (letrozole) Hormonal Therapy 10/22/2007 Arimidex (anastrozole) Dx 1/3/2017, IDC, Right, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Chemotherapy 1/27/2017 Taxol (paclitaxel) Hormonal Therapy 3/28/2017 Arimidex (anastrozole) Targeted Therapy 4/20/2017 Ibrance (palbociclib) Dx 10/12/2017, IDC, Right, Stage IV, metastasized to other Chemotherapy 10/20/2017 Xeloda (capecitabine) Radiation Therapy 11/15/2017 External: Bone Hormonal Therapy 1/18/2018 Faslodex (fulvestrant) Radiation Therapy 8/2/2018 External: Bone Radiation Therapy 11/5/2018 External: Bone Targeted Therapy 10/9/2019 Verzenio Radiation Therapy 11/3/2020 External: Bone Dx 1/22/2021, IDC, Right, 1cm, Stage IV, metastasized to liver, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2021 Xeloda (capecitabine)
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Jun 10, 2021 05:08PM moth wrote:

everyone has raised good points and i just want to clarify that absolutely she deserves her moment to shine and share her amazing talent with the world!

it's that quote that gets under my skin, esp when it's just trotted around on social media and retweeted all over my twitter timeline because on its own, with little context, I just find it veering into that toxic positivity of 'see, SHE'S not whining about things, why are you?' .... but as always, that is my perception and guaranteed it is 100% to do with what's in my head atm, and very little to do with reality


I take weekends off

Initial dx at 50. Seriously???? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: https://nevertellmetheodds2017.tumblr.com/

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/13/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/18/2020 Tecentriq (atezolizumab) Chemotherapy 11/25/2020 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 12/8/2020 External Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Hormonal Therapy 12/15/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/2/2021 External: Bone
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Jun 10, 2021 06:21PM ShetlandPony wrote:

Oh yeah, I could see how taking that one sentence out of context, it could be misused to beat that tired old positivity drum. Blech.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Jun 10, 2021 07:36PM - edited Jun 10, 2021 07:49PM by DivineMrsM

I have a love/hate relationship with AGT which I've watched for years. Imo, even tho they claim the audience chooses the winner, I think it's fixed. Last season a guy who's talent was “the spoken word" won. I could not stand him (and did not think it was much of a talent, but that’s me). I was so positive he would win I didn't watch the final episode after having watched the show the entire season.

AGT is big on sappy, emotional pull-at-the-heartstrings moments. Imo, they also know which judge is going to hit the golden buzzer for which contestant. It's all a set-up for entertainment value. This is apparently what many viewers of the show want to see and the producers give it to them/us. Many times it gags me. However, Jane, her story and her talent, did not.

On many levels, I am glad to see a real woman (not someone in a commercial) living with advanced cancer doing something “normal" in the public eye. (if being on an AGT stage is normal!) Too often, the media portrays cancer patients as pale, bald, miserable looking individuals shuffling aimlessly around with their butt hanging out of the back of a hospital gown while hooked up to an iv attached to a pole. Because of this, people have often looked at me unbelievingly that I live with stage iv cancer. Surely I must be wrong, they think. Surely I should be hospitalized. Surely I should look and act sicker. Maybe seeing Jane and hearing her story on AGT will show people there are different ways of dealing with the disease.

By framing Jane and her personal story the way they did, the final act of a good show, and by her getting the golden buzzer from none other than Simon, everyone is talking about her now which is exactly what the show's head honchos wanted. They manipulate the public for entertainment value.

Jane put me in the mind of Dolores O'Riordan, the late, great singer/songwriter of the Cranberries, and that is probably another reason why I liked her.


found lump 12-22-10—ilc—er+/pr+/her2—stage iv bone mets—chemo~lumpectomy~radiation~arimidex—March 2019-ibrance/aromasin* —Sept 2019-verzenio* —March 2020-xeloda*
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Jun 10, 2021 08:39PM - edited Jun 10, 2021 08:39PM by ShetlandPony

Yep, I figured someone would say that, too. That at least some parts of the Got Talent shows are rigged, edited, planned, manipulative. In spite of all that, I think this performance was real and important, and hope it will further some awareness of the realities of stage iv breast cancer. Jane, if you happen to be reading, I want to send you love and I don't think I say too much when I say everyone else here sends you their best wishes as well.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Jun 10, 2021 09:18PM aprilgirl1 wrote:

Divine - same with me! I am hoping we hear Jane sing a cover of Zombie.

I felt the same that all of you have that posted - I am just mix of anger, sadness, despair, love, hope and amazement at how we persevere despite MBC. Until we can't. I can cycle through these feelings pretty fast. I do admire how Jane is pushing forward and auditioned, because... why not her? I don't love the idea that the show is potentially using her and her dx as a ploy for more ratings but she does have a great voice.

SadiesServant - I have to agree with you, too - we are a strong, tough bunch.

Candy, I applaud her, too - hope she wins. She will be remembered, for sure.

RRabbit - so true. None of this is ok. It will never be ok. There are way too many of us here. Not enough medical breakthroughs of new, better treatments. These thoughts make me feel panicky, and then I try to calm myself and remind myself to hang in there.



recurrence in lymph nodes (superclavicle/mediastinal)"You can do it like it's a great weight on you, or you can do it like it's part of the dance." Ram Dass Dx 11/7/2008, IDC, Left, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 11/13/2019, IDC, Left, Stage IV, metastasized to other, ER+/PR+, HER2-
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Jun 10, 2021 09:18PM - edited Jun 10, 2021 09:22PM by Olma61

I haven't watched any of these shows in years but some of the people from the early American Idol shows were really talented. I love Adam Lambert and Kelly Clarkson was really good too


divine - I lol at the butt hanging out of the hospital gown. I like the slogan/nam of the disability rights organization- NOT DEAD YET.

10/30/2017 Xgeva for bone mets 5/31/2018 Taxol finished! "If one just keeps on walking, everything will be all right” - Kierkegaard Dx 8/3/2017, IDC, Right, 2cm, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 10/28/2017 Perjeta (pertuzumab) Targeted Therapy 10/28/2017 Herceptin (trastuzumab) Chemotherapy 10/30/2017 Taxol (paclitaxel) Hormonal Therapy 5/14/2018 Arimidex (anastrozole) Radiation Therapy 5/30/2019 External: Bone
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Jun 11, 2021 12:54AM - edited Jun 11, 2021 08:11AM by Meja

I get why some may feel anger; mbc is serious and NOT ok.
I am Danish and have never / and do not watch AGT.
When I look past the 'glitter' in Jane's performance, I see a young talented woman. Yes, she has mbc, but she is a singer and wants to be recognised for her beautiful voice. By putting herself forward like this, she also contributes to the visibility of mbc, which I think is so brave and admirable. We need visibility, we need more attention, we need funding for research and ultimately a breakthrough that can provide a cure and so much more until we get to that point.

We are all different, with each our unique and devastating 'mbc story'.
Jane gives us a glimpse of her story, and we can relate, or not, at different levels . Thank you Jane.



Dx 12/10/2015, IDC, Right, 3cm, Stage IIB, Grade 1, 2/15 nodes, ER+, HER2+ Dx 1/11/2016, Paget's, Right, <1cm, Stage IIB, Grade 1, 2/15 nodes, ER-, HER2+ Surgery 1/11/2016 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Dx 4/6/2018, Stage IV, metastasized to bone, ER+, HER2+ Targeted Therapy 10/30/2018 Kadcyla (T-DM1, ado-trastuzumab) Targeted Therapy 8/7/2019 Herceptin (trastuzumab) Chemotherapy 9/19/2019 Xeloda (capecitabine) Hormonal Therapy 5/27/2020 Faslodex (fulvestrant) Targeted Therapy Perjeta (pertuzumab) Chemotherapy Navelbine (vinorelbine) Targeted Therapy Herceptin (trastuzumab) Radiation Therapy Whole-breast: Lymph nodes, Chest wall Chemotherapy Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxol (paclitaxel)
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Jun 11, 2021 07:58AM DivineMrsM wrote:

I like how you mention looking past the glitter, Meja. That's something I automatically do with many things to find what's real. Sometimes on AGT they use slow-motion to accent something like a dancer's super high flip or tumble sequence and I always say, sarcastically, "Oh, wow, look how talented, they can do that is slow-motion." Again, the show is using a technique to add pizzazz to routines but if you were to see the act live, the action would happen so fast you might not catch it all.

It's just the way I watch tv, to look past the superficial to see if there's real substance. I love being entertained. And I'm picky. Not everything is going to float my boat. I like being wowed. When the Kennedy Center honored Garth Brooks, (aired last Sunday) James Taylor came out and sang "The River", a song Garth c0-wrote long before he became famous and which eventually became a big hit. I didn't even necessarily care for James's interpretation of the song, but there was something so incredible about his participation in the event that wowed me. Two massively impressive icons from different genres of music. I was further moved when I looked up some of the song's details and learned that when Garth and co-writer, Victoria Shaw got together, they were inspired to write "The River" after listening to a new CD of James Taylor's music. How full circle of a moment that Kennedy Center Honors collaboration was! Those are the kinds of moments that do it for me.



found lump 12-22-10—ilc—er+/pr+/her2—stage iv bone mets—chemo~lumpectomy~radiation~arimidex—March 2019-ibrance/aromasin* —Sept 2019-verzenio* —March 2020-xeloda*
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Jun 11, 2021 08:05AM DivineMrsM wrote:

Olma, I think I recently learned of that slogan after watching the Netflix documentary "Crip Camp" about a summer camp that disabled kids went to in the 70s, many of whom went on the spearhead the Disablilities Act movement. That led me to read the autobiography of one of the women featured, Judith Heumann: "Being Heumann: An Unrepentant Memoir of a Disability Rights Activist". Simply amazing the years of perseverance by so many to make the ADA happen.

And I love their slogan "Not Dead Yet".

found lump 12-22-10—ilc—er+/pr+/her2—stage iv bone mets—chemo~lumpectomy~radiation~arimidex—March 2019-ibrance/aromasin* —Sept 2019-verzenio* —March 2020-xeloda*
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Jun 11, 2021 02:33PM RhosgobelRabbit wrote:

I think because there is so much toxic positivity especially in breast cancer with the rah rah stuff it immediately can cause a physical/emotional response if we see it try to seep into the MBC community. It can leave us recoiling, making massive time out signs and clutching strings of garlic bulbs that kind of thing.I admit to this reaction sometimes.

Shetland made a good point about seeing an actual face of MBC, not one of those commercial faces. People got to see that, we got to see that. Jane was beautiful, articulate, authentic. I just disliked the quote like moth said because it will so be used without proper context and unfortunately there is alot of comparative stuff when it comes to living with mbc "Well, she could do it, why can't you" from onlookers as moth also pointed out. Sometimes it isn't always where there is a will there's a way. The show used glitter bombs to highlight her, I guess we use virtual glitter bombs with each other when scans come back stable or a treatment works, but its different when executives use them and a very sad and unfortunate situation with one of our sisters to capitalize on her dream (I share this dislike aprilgirl, divine). I celebrate in the dreams of others, Jane's etc, but admit to jealousy that my dreams, things i really wanted are forever out of my reach. I feel like I'm being made to lower the bar and make new dreams besides those i wanted and so admittedly there is a sourness.

Divine made a good jumping off point to discuss what a person living with MBC looks like. People think people in our situations should be in hospitals, and while each of us eventually will get there, we aren't now, so why not show us walking around. Some of us are very thin like Jane, some of us go the blueberry route with the steroids and treatments etc. Some of us have hair, stages of hair or no hair. etc. MBC isn't one size fits all except unfortunately the overall prognosis. But we aren't dead yet. There is no shame in showing a woman daring to smile while sharing about MBC, just like there is no shame showing a woman in tears off and on talking about it a la Shannon Doherty. I just hope for a balance overall when sharing about it, to keep things real. A dear friend of mine sent me the link to a song with those lyrics (not dead yet), and while some of them were a bit naughty for my tastes, i appreciated her answer to my inquiry about how she was doing with that song. it's a good reminder too, that we are still living. Sadie is right, we are a tough bunch.

Can we all just sit and appreciate how much *advise* concerning her diagnosis poor Jane is being inundated with from millions of people right now? I'm getting a headache just thinking about it.

Mets @ Rads planning. Mets to Pelvis, Femurs, Shoulders, Ribs, T. Spine, L. Spine, Sternum, Sacrum/SI Joints. MyRisk neg. KEAP1 "Courage of the heart is very rare, there's a power when its there" 37yrs old @ IV DX. lifeandirises.home.blog/ Dx 7/30/2018, IDC, Right, 4cm, Stage IIB, Grade 2, ER+/PR+, HER2- Chemotherapy 9/26/2018 AC + T (Taxol) Hormonal Therapy 9/26/2018 Zoladex (goserelin) Dx 4/19/2019, IDC, Right, 3cm, Stage IIB, Grade 2, 5/16 nodes, ER+/PR+, HER2- (IHC) Surgery 4/19/2019 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Hormonal Therapy 5/13/2019 Zoladex (goserelin) Dx 5/17/2019, IDC, Right, Stage IV, metastasized to bone, ER+/PR+, HER2- (IHC) Surgery 10/1/2019 Prophylactic ovary removal Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Aromasin (exemestane)
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Jun 11, 2021 06:55PM Olma61 wrote:

Speaking of advice, yes, I already saw a few comments on Janes videos like “you have to get B17, that’s the way to beat cancer!!!” “My uncle went vegan and he blah blah blah” Etc etc

If anything gets me angry in the “online cancer space” it’s crackpot cures being touted to people with our disease.

I spend a lot of time on YouTube because we are cordcutters. I have an ad free subscription and a Roku box. So, I’ve noticedthere are teams of spammers who leave comments with links selling fake cures even on the videos from legitimate cancer organizations! It’s very disrespectful IMO.

I don’t think the ones on Janes video were selling anything, they think they’re helping but ..NO.

10/30/2017 Xgeva for bone mets 5/31/2018 Taxol finished! "If one just keeps on walking, everything will be all right” - Kierkegaard Dx 8/3/2017, IDC, Right, 2cm, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 10/28/2017 Perjeta (pertuzumab) Targeted Therapy 10/28/2017 Herceptin (trastuzumab) Chemotherapy 10/30/2017 Taxol (paclitaxel) Hormonal Therapy 5/14/2018 Arimidex (anastrozole) Radiation Therapy 5/30/2019 External: Bone
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Jun 11, 2021 10:19PM KarPC wrote:

You all have such great points. I was so moved by her performance. It was beautiful - she is beautiful. Of course it was edited to show us what the producers would like us to see. I found her blog (nightbirde.co), and she is an amazing writer who writes about some very dark struggles with cancer and life. It helped me see her as a real person struggling like the rest of us. It seems like she has recently pulled herself out of a dark place. I think she is experiencing the roller coaster ride we all face with a stage 4 cancer diagnosis. We get hopeful and optimistic at times but then we get knocked back down.

After watching her positivity, I wondered if those close to me would think that I should be more positive too. The first thing my best friend said to me after watching the episode was that Jane reminded her of me - we are both fighters.


​Currently on AZD9833 Trial (Oral Serd w/everolimus). Diagnosed with several lung nodules and a small liver met. 5/2021 lung biopsy TNBC. Liver likely still ER+ Dx 4/2016, IDC, Both breasts, 2cm, Stage IIA, Grade 3, 0/14 nodes, ER+/PR-, HER2- Surgery 5/17/2016 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Chemotherapy 6/10/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 10/1/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 2/8/2018, IDC, <1cm, Stage IV, metastasized to liver/lungs, Grade 3, ER+/PR-, HER2- Targeted Therapy 2/16/2018 Ibrance (palbociclib) Hormonal Therapy 2/17/2018 Faslodex (fulvestrant), Femara (letrozole), Zoladex (goserelin) Radiation Therapy 2/26/2018 External: Liver Chemotherapy 2/19/2020 Xeloda (capecitabine) Targeted Therapy 10/15/2020 Afinitor (everolimus)
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Jun 12, 2021 10:28AM - edited Jun 12, 2021 11:33AM by ShetlandPony

Rabbit, oh no, it's a shame Nightbirde or any of us get subjected to all that stupid advice. Meja, like you I hope the visibility Nightbirde has can further education and help us get funding for research, etc. Without hurting her or detracting from her primary goal of Being a Singer.

Rabbit said, "MBC isn't one size fits all except unfortunately the overall prognosis." Our discussion here makes me picture the confusion on the faces of people as they try to comprehend the idea of living with terminal cancer. It does seem that people either think someone with stage iv must need to be in a hospital, or else they have "beaten this thing" and are cured. They have a hard time with understanding that so many of us have times when we are doing well and times when we are not, and how even when we "look good" we are dealing with all sorts of garbage behind the scenes: pain, fatigue, a zillion other side effects and disabilities. And that there is no "done with treatment" until there is isn't any treatment left or we can't take it any more. And they run away from the fact that with extremely rare exceptions, terminal does mean death. "But you're gonna be ok, right?"

I agree many of us have a pretty strong reaction to any hint of toxic positivity being foisted on us. "Massive time out signs" for sure.

My dream was killed by bullies who subjected me to cancer discrimination. I was very very close to being in a prestigious competition in my art form. I don't care much for competition and prizes myself, that's just how I am, but I wanted to be that good. When I began I never dreamed I would achieve that level, but good teaching and my hard work and passion for the art got me there. Then some mean girls drove me off the team by making everyone doubt me when I revealed something of my diagnosis because I needed to ask to have the option to rest if needed while others helped prepare our other groups. How could I work with such people and be part of their group? The cruelty was stunning, really.

Divine, Crip Camp is one of those documentaries that stays with you, isn't it? A powerful story I had never heard before.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Jun 12, 2021 02:32PM illimae wrote:

Moth, I totally get your feelings on this.

However, in my opinion, I think her short and sweet version was probably more appropriate for that moment and I do hope this drives people to a more in depth interview/conversation about our reality.

I too hate superficial toxic positivity and the pressure put on us to always think good thoughts and enjoy every moment but when I think about it from the perspective of others, I’d probably land in that category, not at all by pressure but just the natural outlook I’ve always had. Perhaps (hopefully), she is jut truly enjoying herself.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/20/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Surgery 1/22/2020 Radiation Therapy 2/17/2020 External: Brain Radiation Therapy 7/20/2020 External: Bone Radiation Therapy 12/4/2020 External: Brain Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 12, 2021 02:43PM SF-Cakes wrote:

I practice gratitude daily, it keeps me sane. And, this sums up how I feel at times:

Dx 6/2020, ILC, Left, 6cm+, Stage IIB, Grade 3, 2/4 nodes, ER+/PR-, HER2- Surgery 7/1/2020 Mastectomy: Left Chemotherapy 8/4/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 11/3/2020 Chest wall Dx 1/2021, ILC, Left, Stage IV, metastasized to bone, ER+/PR-, HER2- Radiation Therapy 2/10/2021 External: Bone Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib)

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