Struggling to cope with Stage IV diagnosis and what the future holds.

Thank you for your thoughts. I’m on an emotional roller coaster ride because, at this time last year my husband was fighting for his life from emergency surgery to remove hemorrhaging stomach ulcers. He died January 15.

Counseling is helping.
Joint pain is lessening somewhat; still going to PT (maybe not today - new snow overnight!).

Wakefulness continuing at night. Glad for short afternoon naps! 😊

Weight holding steady. Have also started yoga. Hey, even us older folks can learn new things! I made two quarts of bone broth yesterday. Adding that to my healthier me quest, along with Turkey Tail Mushroom and a mushroom blend. Yes, also taking Letrozole. I have to mark my calendar every morning so I know I’ve taken the Letrozole as that’s something my mind resists.

One of the first things I do every morning is check this forum. I appreciate everyone’s sharing and, especially your commitment and sharing, Chris. Let’s continue living life to the fullest and appreciating being alive every day.

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Joiful, I want to let you know about the Loss & Grief group here on Mayo Clinic Connect should you ever wish to join the discussions:
- Loss & Grief group https://connect.mayoclinic.org/group/loss-grief/

Thanks for checking the forums regularly. Your support is appreciated. It's a good give and get.

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Hi Mary! Colleen invited me to join in. I haven't been around much lately, not because I've been ill but just busy with family and all that life throws at us each day. I was initially diagnosed stage 2, ER/PR+, HER-2 neg April 24,2019. I accepted the chemo/mastectomy route, got my port and was ready to beat this. Beginning of May, after the scans were complete, it changed to Stage 4 with metastasis to my bones and lungs.Prior txt decision and mastectomy thrown out the window. I was put on Ibrance and Letrozole, which I am still on. I've gone thru some aches, fatigue, and hair thinning associated with the Letrozole (estrogen blocker) or the Ibrance. Fatigue went away after awhile but until then I'd sneak in a 30 minute nap here and there and that usually helped. The aches come and go and honestly I can't recall when exactly I stopped noticing any. Of course my left femur (met site) aches if I walk too much (I also like to hike) but I still hike and trudged thru 1 feet deep snow to retrieve a Christmas tree, just taking breaks more often. Life goes on. I'm at 2 yrs. 8 months ( I keep track), keep a positive attitude and push the cancer diagnosis to the very back of my mind. I know it's not easy but you have to look forward to living and keep doing it. Many have said "I may die with cancer but not FROM cancer". Keep your head up. We're all living longer with various treatment options available now.
Peggie

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Big hugs to you. May I ask if you were told if you had a mass/tumor, what the size was and where it is located?
Do the doctors still do PET or CT scans to see if tumors are shrinking?

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Chemo is hard! No way around that. Maybe when she recovers from the covid, she can resume some treatments. Covid is hard too, one of the foster girls that were in our home growing up just passed from it. If your mom is home and on oxygen, she is doing better than many and it might just be time that she needs to get past the lingering effects. The truth is, no one truly knows ALL of the whys and hows of why some recover and some do not. Some things change the odds but not guarantees. Love your mom every day while you have her and you won’t regret it regardless of the outcomes.

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Mary, I too have struggled with those thoughts.
Over 20 years ago, at the age of 44, I was diagnosed with stage 3 lobular breast cancer. I had noticed a dimple near my nipple. All scans- mammogram, ultrasound, and breast MRI, had showed nothing. I spoke with the radiologist regarding my question that "if it wasn't a tumor causing the dimple, what could it be?" She encouraged me to see a breast specialist.
She saved my life.
The specialist decided to do a biopsy. Lo and behold, there was cancer. .. lobular, stage 3 because of the size.
I had a double mastectomy, chemo, and radiation. Cancer was not found past 2 lymph nodes. I went on to take tamoxifen for 5 years and was declared cancer free.
In 2020, on my birthday, and full of optimism that we now were Covid vaccinated and looking forward to rejoining a normal life, I went to my orthepedist complaining of new pain in my hip, suspecting a new area where osteoarthritis was settling in.
He took an Xray, and returned with tearful eyes, telling me of spots on my pelvic bone.
He called my oncologist and off I went.
Sure enough, the lobular cancer had metastasized to my bones.
I was put on the regiment of Ibrance and Letrozole, after months of procedures trying to get a specimen to type it.
All that summer, I sat on my backporch, gazing wistfully at my beloved flower garden, (looking very sad from my neglect), full of fear, gloom, dread, and depression.
Then one day, out of the blue, I had this ephinany -
Why was I perseverating on my death, paralyzed by fear over the suffering that would occur before it?
I was not suffering in physical pain yet.
I was not dying yet.
And when that day did come, I would look back and regret that I wasted all those perfectly good days that had been afforded to me, by wallowing in grief of over what had yet to occur.
So I stood up, put on my gardening gloves, and returned to a state of purpose and productivity, busying myself in the place I love the most ...
My garden...
It felt so good.
And when I was done toiling for the day, I called each of my daughters and chatted. In the next few days, I took to calling and texting all of my loved ones, including my 2 sisters, my 12 grandchildren, and my closest of friends.
And I didn't mention cancer.
I returned to living my life, not as I had known it, because I couldn't deny that it had changed.
And I can't deny that my fear does arise, and whisper in my ear from time to time.
It is not the dying that I fear, but rather the physical suffering.
My go to silence-the-fear lurking in my brain is to remind myself that I could very well die first of a heart attack or in acar accident.
Bottom line is that death will come to us all.
But it is not here yet for me.
So in the meantime, I strive, I choose, to live each day as if cancer does not reside in my body.
I read once that a study was done, regarding regrets, with people who were dying. Most did not hold regret on the things that they had done in their life...
... but rather, they regretted those things that they DIDN'T do in their life.
And I don't want to find myself, at the end of my days, regretting that I wasted all of those perfectly good days that I did have, paralyzed with gloom and mourning over what was to come.
And none of us, whether we are healthy or not, ever know what is to come, anyway!
Today is my birthday, 2 years to the day that the scent of cancer had returned to my life. I am still here, on my backporch, gazing at my garden as it wakens from its winter sleep.
I am not that same fearful, full of dread, gloom and doom, woman who sat here 2 years ago.
I am still among the living. I choose to be productive in my day. I choose to live a life that has a purpose.
Coupled with loosing my father only months before my diagnosis, those cancer treatments over 20 years ago left me utterly fatigued and deep in depression. At follow-up appt. with my radiologist, I embarrassed myself by bursting into tears before either of us spoke. She took my chin gently in her hand and looked my in the eye. She said in her heavy accent, "This is what you do. Each day, you get up and get dressed. Then you choose one chore to do. That's it, only one." I have never forgot the wisdom contained in that woman's directive.
The key to fighting depression is productivity. This restores your sense of worth.
So, in the present, I forgive myself on those days, when I am so very fatigued, that my only productivity lies in getting out of bed, getting dressed, and commiting myself to accomplish only one little thing, whether it be play (a text or phone call) or a simple chore.
Mary, I hope that those strategies raise your spirits as they do mine.
There is life to be living - today. Fill it with purpose, productivity, and time spent with those who cherish you.
Perseverating on future gloom and doom only serves to distract you from this good day that you have right now, at hand.
You can never control what happens to you, but you can control the manner in which you choose to react to it. Choose to do the things that you can do right now, no matter the limitations.
Just continue to live your life as you would have before you received your diagnosis. The only thing that has really changed for me is that all of those "someday" things that I was going to do, or get, are things I am no longer putting off for "someday".
I took that trip back to Illinois, to share the place of my childhood with my husband. I took my bucketlist trip to Greece. I take quick trips to visit my kids instead of getting chores done at home. I cook all those complicated recipes that I had put on my Pintrist for the "someday " when I have time. In reverse, I don't stress about things being perfect on holidays, I focus instead on just enjoying the company of my loved ones. I buy ready-made food instead of laboring away in the kitchen and missing out on playing cards and games with my grandchildren.
I simply made a decision 2 years ago to continue to live my life, only changing things up to make each day more fulfilling and purposeful for myself.
The act of pondering on the reality of what cancer has in store for me is now the only thing relegated to my "someday" list.
In turn, I am currently focused on dusting off the previous items on that list and checking them off...
one by one.

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Mary, I too have struggled with those thoughts.
Over 20 years ago, at the age of 44, I was diagnosed with stage 3 lobular breast cancer. I had noticed a dimple near my nipple. All scans- mammogram, ultrasound, and breast MRI, had showed nothing. I spoke with the radiologist regarding my question that "if it wasn't a tumor causing the dimple, what could it be?" She encouraged me to see a breast specialist.
She saved my life.
The specialist decided to do a biopsy. Lo and behold, there was cancer. .. lobular, stage 3 because of the size.
I had a double mastectomy, chemo, and radiation. Cancer was not found past 2 lymph nodes. I went on to take tamoxifen for 5 years and was declared cancer free.
In 2020, on my birthday, and full of optimism that we now were Covid vaccinated and looking forward to rejoining a normal life, I went to my orthepedist complaining of new pain in my hip, suspecting a new area where osteoarthritis was settling in.
He took an Xray, and returned with tearful eyes, telling me of spots on my pelvic bone.
He called my oncologist and off I went.
Sure enough, the lobular cancer had metastasized to my bones.
I was put on the regiment of Ibrance and Letrozole, after months of procedures trying to get a specimen to type it.
All that summer, I sat on my backporch, gazing wistfully at my beloved flower garden, (looking very sad from my neglect), full of fear, gloom, dread, and depression.
Then one day, out of the blue, I had this ephinany -
Why was I perseverating on my death, paralyzed by fear over the suffering that would occur before it?
I was not suffering in physical pain yet.
I was not dying yet.
And when that day did come, I would look back and regret that I wasted all those perfectly good days that had been afforded to me, by wallowing in grief of over what had yet to occur.
So I stood up, put on my gardening gloves, and returned to a state of purpose and productivity, busying myself in the place I love the most ...
My garden...
It felt so good.
And when I was done toiling for the day, I called each of my daughters and chatted. In the next few days, I took to calling and texting all of my loved ones, including my 2 sisters, my 12 grandchildren, and my closest of friends.
And I didn't mention cancer.
I returned to living my life, not as I had known it, because I couldn't deny that it had changed.
And I can't deny that my fear does arise, and whisper in my ear from time to time.
It is not the dying that I fear, but rather the physical suffering.
My go to silence-the-fear lurking in my brain is to remind myself that I could very well die first of a heart attack or in acar accident.
Bottom line is that death will come to us all.
But it is not here yet for me.
So in the meantime, I strive, I choose, to live each day as if cancer does not reside in my body.
I read once that a study was done, regarding regrets, with people who were dying. Most did not hold regret on the things that they had done in their life...
... but rather, they regretted those things that they DIDN'T do in their life.
And I don't want to find myself, at the end of my days, regretting that I wasted all of those perfectly good days that I did have, paralyzed with gloom and mourning over what was to come.
And none of us, whether we are healthy or not, ever know what is to come, anyway!
Today is my birthday, 2 years to the day that the scent of cancer had returned to my life. I am still here, on my backporch, gazing at my garden as it wakens from its winter sleep.
I am not that same fearful, full of dread, gloom and doom, woman who sat here 2 years ago.
I am still among the living. I choose to be productive in my day. I choose to live a life that has a purpose.
Coupled with loosing my father only months before my diagnosis, those cancer treatments over 20 years ago left me utterly fatigued and deep in depression. At follow-up appt. with my radiologist, I embarrassed myself by bursting into tears before either of us spoke. She took my chin gently in her hand and looked my in the eye. She said in her heavy accent, "This is what you do. Each day, you get up and get dressed. Then you choose one chore to do. That's it, only one." I have never forgot the wisdom contained in that woman's directive.
The key to fighting depression is productivity. This restores your sense of worth.
So, in the present, I forgive myself on those days, when I am so very fatigued, that my only productivity lies in getting out of bed, getting dressed, and commiting myself to accomplish only one little thing, whether it be play (a text or phone call) or a simple chore.
Mary, I hope that those strategies raise your spirits as they do mine.
There is life to be living - today. Fill it with purpose, productivity, and time spent with those who cherish you.
Perseverating on future gloom and doom only serves to distract you from this good day that you have right now, at hand.
You can never control what happens to you, but you can control the manner in which you choose to react to it. Choose to do the things that you can do right now, no matter the limitations.
Just continue to live your life as you would have before you received your diagnosis. The only thing that has really changed for me is that all of those "someday" things that I was going to do, or get, are things I am no longer putting off for "someday".
I took that trip back to Illinois, to share the place of my childhood with my husband. I took my bucketlist trip to Greece. I take quick trips to visit my kids instead of getting chores done at home. I cook all those complicated recipes that I had put on my Pintrist for the "someday " when I have time. In reverse, I don't stress about things being perfect on holidays, I focus instead on just enjoying the company of my loved ones. I buy ready-made food instead of laboring away in the kitchen and missing out on playing cards and games with my grandchildren.
I simply made a decision 2 years ago to continue to live my life, only changing things up to make each day more fulfilling and purposeful for myself.
The act of pondering on the reality of what cancer has in store for me is now the only thing relegated to my "someday" list.
In turn, I am currently focused on dusting off the previous items on that list and checking them off...
one by one.

Jump to this post