The in-between life and death cancer

@gangcarotid1
Thank you—that means more than you know. I’m so glad the words landed where you are, and that they helped you . Your not alone you aren’t none of us are, even when the “cancer beast” looks a little different for each of us. Your kindness and that huge blessing are carrying me today. Sending a big hug right back to you!

@shellyk89: Along with @gingerw I am also going to extend a welcome here at Mayo Clinic Connect. And like you have relayed in your post, I also have a diagnosis of Stage 4 cancer; in my case it's metastatic melanoma for which treatment has been suspended -- at least for now -- due to a toxic response to the immunotherapy for which I'm undergoing another form of treatment in an attempt to reign in those adverse effects. So I can well understand how in your introduction to accompany your avatar you have indicated your interest in learning what has worked, what hasn't, some questions you wished you'd asked sooner. I'd like to hear more about that from your perspective: specifically, how long has it been since you've been diagnosed and what treatment have you or are you undergoing? What other support groups or forums are you involved in and what questions do you currently have?

I can share with you that one of the things that has worked for me has been shifting from the thought of "I have metastatic melanoma" to "I'm LIVING with metastatic melanoma" and to focus on the present. While I'm realistic in preparing for the possiblity of what the future may hold - and in doing so, compiling important memories, photos and thoughts in journaling for my family - I've integrated things I've learned into my daily life such as finding joy in the mundane, expressing gratitude and to view myself not just as a diagnosis, but a person still living a life. As an author I read stated, "regardless of age or diagnosis, we remain human forever." If we live with that attitude, as trying as it can be at times, I hope and feel that is how we will be remembered. Does that resonate at all with you?

ShelleyGrayWings: Shelley89:
Shelley, you have put into words the deep, raw feelings that I experience everyday WITH you! Thank you for your post - those words will live on by every cancer patient that reads them.
I applaud your ability to describe our plight and journey not wanted. To me you are an Angel to guide us to how we must manage our daily lives trying to appear “normal” to others while suffering our true reality of cancer slowly robbing us of our lives.
My heartfelt thank you Shelley!

@shellyk89, Dear Shelly, you have touched my soul so deeply with your words, I wish that I’m able to express myself with the depth of your heart, I felt like you were inside me saying everything that I want to say but I don’t have to do this because you have done this for me and everyone else who is going through the same suffering. I’m so sorry that you’re a young woman with children who desperately need you and you’re carrying everything inside for them so that they don’t have to be afraid but children are pure in heart and they are so very connected to their mothers, they have a part of their mother’s soul and we can’t hide very much from them, we can only try to keep them safe and reassure them that we will always love them and be there however we can. It always comes in waves of fear, anger and often so much anger and we ask God why this happened, I always talk to God and tell Him how I feel but I know that He already knows what is in my heart, the beautiful revelation for me is that I began to realize that God is there and listening to me, sometimes I can feel His presence and I get answers to my prayers, they come to me in many ways and from sources that are so unexpected but I know that they are for me. We don’t get to choose the life we’re given and it can sometimes make us angry and helpless but you eventually learn to accept whatever blessings we have and keep moving forward, Shelly, always keep praying and don’t lose your faith in the life you’re given because you’re not alone, you are always surrounded by God’s love, amen.

@mapleskoff
I’m so sorry you’ve had to carry this. Two cancers, radiation, the waiting, the scans, that sharp-knife feeling above your neck—I know that sensation too well. It’s a terrible, lonely kind of place, like holding your breath and forgetting how to let it out. You’re right! Unless you’ve stood here, you can’t really know what it feels like.

I’m grateful your radiation helped the lung cancer, and I’m holding hope with you about the kidney cancer. I’m also glad you have oncologists who are attentiveespecially the one who calls with MRI results. That kind of care matters!. And yet, I hear the ache underneath your response that nobody seems to see you in all of this. Not the patient, not the hospital file, but the man who has lived 84 years, who feels, who worries, who loves. That matters to me. You matter to me and I get it.

I’m sorry your kids don’t talk to you about it or much at all. That kind of silence can feel like another weight to carry. And I understand what you mean about your wife, she loves you, she’s walked near this road herself, and still she isn’t in your skin. Both things can be true at once her care and your aloneness.

Please don’t feel you have to keep it all inside. If you ever want to put words to the days that feel foggy, or the fear that sits like a blade, or the small, good moments too, I’m here to read them. You’ve already taken a place in my heart as well, and I’ll keep it safe. PLEASE BELEIVE.

Thank you for saying you enjoyed my writing. It helps more than I can say to know it reached someone who lives in this same in-between. I’m sending you steady wishes—for ease where it can be found, for clarity when the fog lifts, for moments that feel like yourself, and for people who can meet you where you are. You deserve to be seen, not just your diagnosis.

I’m thinking of you, and I’m grateful we found each other in this place. Please write again whenever you want. I’ll be here, listening with my whole heart.

@crbarefoot you are very welcome. Im happy i could help

@grammato3

Thank you for the welcome—and for sharing your story so openly. I’m sorry you’re in this place with metastatic melanoma, and especially that you’ve had to pause immunotherapy because of the toxicity. That kind of trade-off is its own grief, and I’m hoping the new approach helps calm the side effects so you get some relief.

Your shift from “I have” to “I’m living with” really resonates. I’ve been trying to do the same—less “I am stage 4 triple-negative breast cancer” and more “I’m a mom who happens to be living with this.” Like you said, we’re still whole people, not just diagnoses.

To your questions: I was diagnosed with stage 4 TNBC in March 2025 (about a year ago). The pathology confirmed the triple-negative profile—ER 0%, PR 0%, HER2 0+—with a high Ki-67 (up to 90%). The liver biopsy showed metastatic mammary carcinoma (CK7 strong, GATA3 strong; CK20/CDX2/TTF-1/Napsin A negative), and next-gen sequencing from the liver tissue showed BRCA1 promoter methylation. PD-L1 came back at 10%, so immunotherapy was on the table.

Treatment-wise: I started carboplatin + gemcitabine on 5/12/2025, and we added pembrolizumab (Keytruda) on 7/1/2025 because of that PD-L1 result. Scans after cycle 5 in August 2025 showed progression, so we stopped. I started sacituzumab govitecan (Trodelvy) on 9/16/2025, and the chemo knocked my counts down—I had chemo-induced neutropenia and had to get the white-cell booster shots to keep going. We got a great scan in December 2025 everything was shrinking big time. Then my most recent scan in **March 2026 showed progression again, now spreading to my neck and chest. Bone scan was clear, an the one liver lesion gone but then a new liver lesions different spot+ a mediastinal node are still in the mix along with the new areas.

For support, Mayo Clinic Connect is my main place right now. I’ve lurked in a few Facebook TNBC stage 4 groups but I’m not very active there; Connect feels kinder and less overwhelming. I finally asked my doctor for a therapist referral because up until now I’ve only been unloading into my notebooks—honestly, I’ve only been brave enough to take the mask off in my writing, and I think it’s time I had a space to say things out loud.

Questions I wish I’d asked sooner? What “stable” really means day-to-day, how to plan scans around family life without living scan-to-scan, and how to cope when a regimen has to stop because of side effects or progression without feeling like I failed. I also wish I’d asked earlier about supportive/palliative care as quality-of-life care, not “end-of-life” care. And I’m still figuring out how to talk to my kids in ways that are honest but not scary.

Like you, I’m trying to anchor in the present—finding joy in the mundane (pancakes on Saturday, the chaos of Lego on the floor), writing things down for my kids, and reminding myself that I’m still me. “We remain human forever” is exactly it. Thank you for putting that into words. I’d love to hear what helped you make that mental shift, if you’re willing to share.

Im also building a website/blog soon to be available. My brand GrayWings. That supports people in the in-between. Through writing and spreading awareness. 50 percent of donations go to any cancer facility of the buyers choice.

@shellyk89: Along with @gingerw I am also going to extend a welcome here at Mayo Clinic Connect. And like you have relayed in your post, I also have a diagnosis of Stage 4 cancer; in my case it's metastatic melanoma for which treatment has been suspended -- at least for now -- due to a toxic response to the immunotherapy for which I'm undergoing another form of treatment in an attempt to reign in those adverse effects. So I can well understand how in your introduction to accompany your avatar you have indicated your interest in learning what has worked, what hasn't, some questions you wished you'd asked sooner. I'd like to hear more about that from your perspective: specifically, how long has it been since you've been diagnosed and what treatment have you or are you undergoing? What other support groups or forums are you involved in and what questions do you currently have?

I can share with you that one of the things that has worked for me has been shifting from the thought of "I have metastatic melanoma" to "I'm LIVING with metastatic melanoma" and to focus on the present. While I'm realistic in preparing for the possiblity of what the future may hold - and in doing so, compiling important memories, photos and thoughts in journaling for my family - I've integrated things I've learned into my daily life such as finding joy in the mundane, expressing gratitude and to view myself not just as a diagnosis, but a person still living a life. As an author I read stated, "regardless of age or diagnosis, we remain human forever." If we live with that attitude, as trying as it can be at times, I hope and feel that is how we will be remembered. Does that resonate at all with you?