Not Exactly Remission but a Lull. How to approach this?

Posted by Miriam, Volunteer Mentor @mir123, May 13, 2023

Ten months ago I discovered a lump in my left breast. Then came months of diagnostics--it was an unusual NET--rare and aggressive in any case. Then months of delay as kidney disease was diagnosed and nephrologist had to weigh in on anesthesia etc. Then lumpectomy, 3 weeks of radiation, and AI. Tolerated all this. No chemo or targeted immunotherapy due to my preference.
Now active treatment is over. My oncologist will monitor me and do blood work every 90 days. I've been told I can live for a few years, but most likely the cancer will spread. How have other people dealt with this uncertainty? I'm happy be alive and with my family, and feel ok. I'm retired, almost 70, and I was set to go to grad school just for my own edification when I got the diagnosis. I can think of lots of things I like to do--but I feel remote from other people who seem unaware that we are all mortal. I'll take a minimalist approach to future treatment. Should I have short-term goals? Aspirations? Just hunker down in daily life? This experience has changed me--and that is fine--but I can't just go back to living the way I was. Advice welcome! Love the chat board--much gratitude.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

@mir123

Thank you--I know exactly what you mean. I've taken a similar treatment path, and am satisfied with it. Wishing you all the best. And I'm grateful for the prayers.

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@mir123
Adding to my previous comment that I'm focusing on short term goals these days. Long term goals are still great so long as the steps you need to take each day are things you enjoy -- like taking a class that you enjoy. I guess when I was thinking of long term goals, I was really thinking that I'm no longer into delayed gratification. I'm not going to sacrifice what I like to do today, this week, this month, this year knowing that it will pay off in 5 years when I may not reach that mark. If I like the small goals needed to achieve a long term goal then that would be great.

I also like that @windyshores suggested maybe taking one class at a time. That's a great idea so classes don't monopolize all your time and you have plenty of time to do the other things you enjoy as well. Like she said, it's a bit different for each of us. Do what feels right for you. 🙂

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@californiazebra

@mir123
Adding to my previous comment that I'm focusing on short term goals these days. Long term goals are still great so long as the steps you need to take each day are things you enjoy -- like taking a class that you enjoy. I guess when I was thinking of long term goals, I was really thinking that I'm no longer into delayed gratification. I'm not going to sacrifice what I like to do today, this week, this month, this year knowing that it will pay off in 5 years when I may not reach that mark. If I like the small goals needed to achieve a long term goal then that would be great.

I also like that @windyshores suggested maybe taking one class at a time. That's a great idea so classes don't monopolize all your time and you have plenty of time to do the other things you enjoy as well. Like she said, it's a bit different for each of us. Do what feels right for you. 🙂

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Thank you! This makes sense. I benefitted from your thinking. My daughter turned me on to Domestika for classes. Each class is short and inexpensive, but excellent. Right now I'm taking one on keeping a travel journal and am in the middle of one on drawing. I'm also back to using zoom as I did in the pandemic and "attended" a friend's concert 2000 miles away.
Still trying to fit in the idea of a big picture, if there is one. I wish there was some life coaching for cancer patients!

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Cancer. Wow. Scary to hear, scary to say out loud, scary to include in description of ourselves or the people we care about. I am 65 and until my diagnosis I used to tell everyone I would live to be 104 (as a visiting nurse, one of my favorite patients was 104). Now, that is uncertain. I am old enough to have a heart attack, a stroke, car accident, falling down the steps. I’m taking each day as it comes. No rose colored glasses. Some days better than others. I have given myself permission to feel happy sometimes, to actually forget about cancer sometimes (hard but doable), to make short term plans, to have a pity party once in a while. Women are so used to being the caretakers. We need to free ourselves to ask for help-to give someone else the opportunity to feel good with helping someone

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@mossa

Cancer. Wow. Scary to hear, scary to say out loud, scary to include in description of ourselves or the people we care about. I am 65 and until my diagnosis I used to tell everyone I would live to be 104 (as a visiting nurse, one of my favorite patients was 104). Now, that is uncertain. I am old enough to have a heart attack, a stroke, car accident, falling down the steps. I’m taking each day as it comes. No rose colored glasses. Some days better than others. I have given myself permission to feel happy sometimes, to actually forget about cancer sometimes (hard but doable), to make short term plans, to have a pity party once in a while. Women are so used to being the caretakers. We need to free ourselves to ask for help-to give someone else the opportunity to feel good with helping someone

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Yes--learning to accept help has been very positive. Thanks for the reminder.

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@mossa

Cancer. Wow. Scary to hear, scary to say out loud, scary to include in description of ourselves or the people we care about. I am 65 and until my diagnosis I used to tell everyone I would live to be 104 (as a visiting nurse, one of my favorite patients was 104). Now, that is uncertain. I am old enough to have a heart attack, a stroke, car accident, falling down the steps. I’m taking each day as it comes. No rose colored glasses. Some days better than others. I have given myself permission to feel happy sometimes, to actually forget about cancer sometimes (hard but doable), to make short term plans, to have a pity party once in a while. Women are so used to being the caretakers. We need to free ourselves to ask for help-to give someone else the opportunity to feel good with helping someone

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@mossa -- your last statement was a great reminder to me.

I generally feel like accepting help makes me a burden and that I'm putting people out. I've always felt like if I can do it for myself, I should. I feel guilty otherwise. However, you just reminded me of what I was told 10 years ago when I was first diagnosed with breast cancer. Part of the initial process prior to treatment was to have me talk to the social worker on the breast cancer team. I only remember one thing she made a point of telling me:

"Don't deprive others of the opportunity to help you because it will make them feel helpless."

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@californiazebra

@mossa -- your last statement was a great reminder to me.

I generally feel like accepting help makes me a burden and that I'm putting people out. I've always felt like if I can do it for myself, I should. I feel guilty otherwise. However, you just reminded me of what I was told 10 years ago when I was first diagnosed with breast cancer. Part of the initial process prior to treatment was to have me talk to the social worker on the breast cancer team. I only remember one thing she made a point of telling me:

"Don't deprive others of the opportunity to help you because it will make them feel helpless."

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I’m so happy that you shared this! I think this is going on my fridge.

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I am doing fine after all my cancer treatments, but now, and then, I found detailed coloring books for adults (mostly bought on Amazon) and gel pens take me to sort of a zen state with the ebb and flow of the pens on the paper.

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@raebaby

I am doing fine after all my cancer treatments, but now, and then, I found detailed coloring books for adults (mostly bought on Amazon) and gel pens take me to sort of a zen state with the ebb and flow of the pens on the paper.

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I have friends who love coloring mandalas. I'm taking a class on floral patterns and just discovered acrylic pens...how can I have lived so long without them? Enjoy.

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I think it brings me back to my childhood when I woould paint by number with oils. It's a part of my brain that needed it. I love painting pictures of Art Deco clothing the most. I also have a good time with Coloring greeting cards I order on Amazon. I sometimes get good deals at Ross on alchol based pens. I love glitter gel pens the most.

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Mortality. A part of the reality in the world we live in. When things are going well in life, we tend to put our thoughts of a life-with-a-stopping-point far from our daily thoughts. But when catastrophic illness or accident comes our way, those thoughts of life and death surface so readily in our minds. It's our human condition to want to live, and its so natural to think that our last day will not be today.

I am 3 1/2 years out from TNBC. Though there are scars and other physical factors that remind me of where I've been, it is the processing of the trauma that remains, too. The Bible tells us to "teach us to number our days, that we might present to You a heart of wisdom". It's wise to remember that our days are limited - that there is a beginning and an end. That truth impacts how we live every single day, and the choices we make are born as a result of that truth.

So whether its a class, spending more time with friends and family, mentoring the next generation, saying those all-important things we forget to say to others, helping and volunteering, starting a new project, painting. . . it's that we make the choice to LIVE. There was a point that I finally reengaged with life. . . I started growing my hair again after a few years . . . I started that 30-year-long dream of remodeling my kitchen (we are still into the process, almost six month later, lol) . . . I returned to my business, working even though I still feel some fatigue . . . making plans with others to do things . . . and on and on.

Some days, I do well with short and long-term goals. . .other days, I am so very human, and a bit of uneasiness creeps into my being. But I think that's natural. We set our minds aright, focusing on things we can control, and letting go of those things we cannot. We don't expect to be any more "perfect" in our days now than before we had cancer, and yet we are changed from the very core after having been where we've been at. We see life differently, and hopefully, that is a good thing for each of us.

I believe only God knows the days appointed for me, so in that, I take a bit of pressure off myself. I still make mistakes, I still have grumpy moments and sad moments, but most of all, I LIVE - just like I did before. But this round, I know and understand more fully that the Lord, literally, holds my days. 🙂 "Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be." Psalm 139:16

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