A place to talk death and dying issues
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This thread is covering where my head and heart are these days. After getting through 5 of 8 cycles of most recent chemo regimen, I was rescanned, and my bone mets (throughout back, ribs, shoulders, hips) had not shrunk, but hadn't grown. And they weren't very hot. I told MO, and he concurred, that I wanted to stop the chemo. Had a blood biopsy to see if they could target future treatments more precisely, but the results didn't yield useful info. When I have a mets to soft tissue eventually, then they can get a decent sample to biopsy and do genomic testing. But without that info, MO said future treatment would have to be chemo. We left it that I'll make a decision when the time comes.
In the meantime, for the first time in 8 years I do not have any cancer drugs in my body. Just the ordinary things an older woman takes for cholesterol and depression and allergies. I feel FANTASTIC! I have energy. I'm wide awake. I feel alive. I'm interested in getting into every day and doing things. I have travel plans. My body systems work in a way I recognize from my 50s.
I choose not to try to tackle the question of 'will I return to treatment with my next mets'. Today my answer would be, No thank you.
I am grateful to all of you posters who are talking about your thoughts and journeys with this question. There are very few in my life with whom I can discuss this candidly.
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Sandy, beautifully said.
Pearl, it’s so interesting to hear about your body and energy without the cancer meds. I hope for all good things for you
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Well, here I am. This afternoon, I finished the radiation planning and may even have gotten my first treatment. You'd think I'd know but I don't. I will get 15 radiation treatments to my brain with what my RO calls "memory preserving" zaps. Brain cancer causes cognitive decline. Brain radiation causes cognitive decline. They will do whatever they can to preserve my brain function. Doesn't look good, though. I have many (19-20) brain lesions/tumors. I'll do the 15 treatments and see how it goes. I don't know how or when they will scan to see what is happening. I'm playing it by ear. I'm not doing the "normal person mode" (doing anything to survive). Most people on BCO do that and I wonder why. I make informed decisions based on how much trouble I will have being happy and living my life with some joy. For instance, my RO wanted me to take a memory enhancing drug that may help with cognitive function during brain radiation. Of course, it has side effects. For me, most bothersome side effects are GI side effects. This memory drug may (does) cause them. I gave it the old college try. I took it for three days and started having abdominal pain so I stopped. My doctor will probably not believe me. Three of the smallest doses made me stop. That is my choice. I may not ever do chemo again. No Xeloda for me. That has SE's I really don't want. This diagnosis has freed me to make this choice which I appreciate.
On the up side, I am still not sleeping AT ALL. It has been since May 12. Why is that the up side? I have all this extra living time, being awake for most of my time to live, read, think, ponder and enjoy my thoughts. I get the feeling good with no drugs. I am off of all cancer drugs. I had no idea how they make you feel, even with no serious side effects. I feel amazing, taking Dexamethasone (heavy duty steroid, same one they gave Kentucky Derby horses, true animal cruelty) for 2.5 weeks. I am worried about coming off of it because I really like what it does. Mental clarity and being hopped up all the time is wonderful. I may be addicted.
So we wait and see how it goes. I don't have a death wish. I'd like to live as I am now for a while. That does not seem to be in the cards, though. I don't feel guilty leaving a lot of my end of life tasks for others. That is my payback for all I have done for others in the past.
Now the real downside. I have NO idea what will happen to me during whole brain radiation. Could be really bad or not. My cognitive function could decline rapidly but then I would be out of it and not really know it. I have to think about that. Wonderful to catch up with all of you. I was wondering where I would post to people but then the discussion came up in death and dying and it seemed like the right place.
Rabbit, Rabbit, Rabbit. I am here with you. All of you, too. I am fine. Feeling wonderful. About time. Yeah, it is about time.
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Jaycee, I hear you. Doing "anything" to survive doesn't really make sense anymore. Early on in this journey, I was in the "anything" mode. I've changed my thinking in the last 6 months.
It's harsh that you may have cognitive decline, perhaps not even be aware of it (which is worse - knowing or not knowing?). I respect your decision not to use the medication to mitigate cognitive decline.
I wish you feeling alive and in control of your life every day. I also wish you restful sleep so you can feel good during your awake hours.
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jaycee49- good to hear from you. I wish you few side effects and good cognition. I did feel amazingly good off Ibrance /faslodex for 2 months- even without the steroids
You make thoughtful decisions and probably will continue to do so
Higs
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Jaycee-
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It's so nice to read over everyone's thoughts about this. Thank you all for sharing your wisdom and experiences. I've been thinking about this stuff too.
To be honest, I feel like the last six months I've been fighting tooth and nail just to get through treatment. Not surprisingly, it doesn't resemble the peaceful end of life I had hoped for at all, but when does life ever work out that way?
Part of what spurs me onward is that my cancer makes me feel so sick when it's spreading uncontrolled. But the chemo also makes me sick, and robs me of so many good days. I feel stuck between a rock and a hard place. Good days are becoming too rare, and bad days are too common. I also have widespread and increasing pain, which terrifies me.
When is enough, enough? I have not been able to answer that question for myself yet, but I do feel that I'm getting closer. I don't want to die, and what I'm doing now is not really living either, but it's what I have.
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Well, I DID have a treatment yesterday. I could tell because I had a pretty bad stomach ache right after breakfast for about three hours. (One treatment and wham. That was fast.) It went away gradually and stayed away. I called the RO's office and left a message and no one ever called back. Not a good sign. We'll see how it goes today. I took an anti-nausea med right away because my nausea feels like pain, not wanting to throw up. Always has. The med maybe worked some. Eat lots of small meals, blah, blah, blah.
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Rhosgobelrabbit. Thank you so much. I spoke with my onc about just that - no response, response, or partial response. We agreed to try one more line of chemo after this as my performance stats are good. She promised that she would tell me when it was futile to try more. The discussion really lifted me up.
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I'm staying at my Dad's for a few days (visit to historical MO in big city, although now I am treated by regional MO a few hours away). Dad's 93 and I've been helping him with finding options for next steps (my beloved stepmom died in Sept). We talked so frankly (he's a retired MD), and I shared that, unless something big changes (like advances or new info about my cancer-genome-specifics-magic), I'm not pursuing further treatment. He's a rational, careful thinker, and said, "I don't blame you." Oof. I think I needed to hear that.
In the last few weeks I have started coughing. Can't stop -- feels like chest cold or pneumonia (which I've had) -- but no fever, no infection symptoms. I'm so f-ing scared about this. I'll tell my historical MO about this tomorrow morning, of course. Dad encouraged this, but I feel sad in a way I can't share with my wife or sister or best friend. I'll wait (uncharacteristically) to alert them to my scared state.
This is the shitty place of Stage IV. Of course I'll probably die because of this before my time. But is that now? And which trusted, loved allies do I share this info with? At what point?
I hate right now.
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Pearl-girl, my first thought was "Why aren't you telling your wife that you're scared?" Then I thought for a minute and now I think I get it. I'm scared now, too, because my pain is sharper than it was and I'm afraid that... You know... I don't want to tell my husband every time I feel afraid or that I'm hurting more. I totally get that.
I'm glad you got to spend some time with your dad. My dad is 88 and also a retired MD. He is very upset by my diagnosis and doesn't want to think about how this is affecting me emotionally. I just share the bare medical facts with him and he's good with that. He's never been one to deal with emotions. My mom, his wife of almost 60 years, died 3 years ago. He never said the word "Alzheimer's" but instead would say "Mom's condition".
I'm glad we have this place to come and talk about how we're feeling. It's just easier to tell people who ask, "Oh, I'm doing well" and leave it at that.
I'm sorry about your cough. I hope it's "nothing" or "just allergies". It just one more thing to worry about.
Hugs to you...
Carol
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Buttons,
You nailed it—exactly how I’m feeling—if I’m feeling anything at all. I feel completely stuck. I hate chemo. Have been on and off Abraxane for the last year. I have no appetite at all. Not sure if part of that is depression? The only thing I am living for is to fly back to PA to see my family. I regret SO much the decision to move to FL. I am seriously considering moving back by myself to be closer to my family. DH is no help. He refuses to leave FL, so I’ll be doing it on my own. I feel numb. I just hate the woman I’ve become. I used to be strong, capable, respected...worked with some of the best biological minds in the business. Oh, if they could see me now. No hair, no confidence, no joy. Nothing at all that resembles the old me.0 -
booboo, I remember when you were feeling this way a few months ago, and how much better spirits you were in when you visited your family. Your sisters gave you so much strength. You sounded like a new person. Do you have a trip planned already? Soon?
Edited, because predictive text! Lol
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Jaycee, I love your candor. In hope the WBR works with minimal effect on cognition.
I have appreciated this recent discussion so much. It's the self-discussion that I can't quite close. When is enough enough? How will I know? I know I'm not there yet, but I don't want to lose sight of the realistic balance or grace that I hope for.
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I’ve been reading for hours to catch up...lots of great discussions that are helpful for all of us.
In regards to knowing when enough is enough...the only experience I have to share is that of my mother. She had ovarian cancer for 3 years. Her treatments killed her platelets even though it worked very well on her cancer early on. Mom was not in denial about her prognosis but man she did NOT want to die. She fought tooth and nail to get those treatments. Her grandchildren were definitely her driving force. For her, the decision was made for her, with other treatment options being very harsh with nasty side effects (no thank you) and her current treatment failing. Her CA-125 going up and up and up.
She met with her oncologist on November 17 for confirmation that treatments weren’t helpful and therefore needed to stop...she died a month and half later. She wanted to go quickly and she did.
I share this because ***I thought*** she would have some time for her body to recover and maybe she would feel a bit better before her decline. Nope. It was fast and furious and completely out of her control. That’s the thing...none of this is in our control. We can want our dying process to go one way, but we don’t get to choose...not really.
Mom either had major progression to her brain or the drug interactions were making her out of her mind (we will never know)...but pretty much immediately, her body started shutting down. Her ability to communicate was drastically impaired. Her mobility almost changed over night. It’s just really unbelievable to think back at how quickly she slipped away.
I guess I share all this to say...planning for death is a nice gesture, but the reality is we have no control over the process, so either get busy living or get busy dying (to quote one of my favorite movies, Shawshank Redemption). sorry if that sounds harsh—I’m definitely not trying to take away from the enormous task of internalizing one’s impending death. I’m not there personally. Just sharing my experience with my mother
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Kjones, I appreciate your sharing details of your mom's rapid decline. Your observations and comments on the death process are right on the money. [The Shawshank Redemption reference is especially touching! (I toured the Ohio Reformatory where some of the film was shot).]
I've listened to many end of life stories from different people, and it appears to me that death almost never seems to unfold the way we prepare for it to happen. We think we'll be at the bedside holding a hand, not stuck in traffic miles away or just having left the room to go pee or thinking surely there was more time left only to receive a phone call in the middle of doing something else that seemed important at the time but ended up feeling so incredibly trivial in hindsight.
I think that's death's nature. It is not controlled. We do the best we can to do all the right things when faced with it. Lots of factors surround how that will go.
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Kjones, thank you for telling your mother's and your family's story. I think you are right - none of us know when our time will come, and when it does, it doesn't go the way we expect it to.
I'm on a slight treatment break from Gem/Carbo while we consider whether I need to have radiation to deal with some pain issues. I am hoping that the small break from treatment will allow some of the background noise in my body to subside, and maybe I can get a better sense for how I really feel physically. I've been anemic from chemo for a while, and not feeling good for a number for reasons. I really wish there were an "easier" treatment that would work on me.
booboo, I know what you mean about the sadness of not resembling your old self. I find myself trying to hold on to my old self for as long as possible, but that gets harder and harder, as my cancer gets worse. I think that's one of the hardest things about this disease - the incremental loss of so many things about ourselves. I've thought before about how cancer is basically a long series of losses, until in the end (in the case of MBC) we lose our lives. Sorry if that sounds too depressing, but that's just how I see it.
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On June 18th the Elizabeth Whitefield End-of-Life Options Act goes into effect and medical aid in dying is authorized in New Mexico.
It's time. I need to write down some very important decisions I made this morning, June 20, 2021. My bowel system is broken. I have not had a normal bowel movement in about 3-4 months. My system shut down due to either MS (most likely) or a neurological deficit caused by brain lesions. If it is caused by MS, it is called neurogenic bowel. It doesn't matter which. I can't live like this. I will determine if I have six months to live to see if I qualify for the Elizabeth Whitefield End-of-Life Options Act. If so, I will take advantage of that option as soon as possible. (One other option is available. VSED (Voluntary stopping of eating and drinking) which would not require six months to live. I need to read up on that. In my current condition, unable to process food, it might not be too bad. I can easily not eat.)
I have decided to stop all treatment. I can't tolerate the side effects of further treatment. I have studied the treatments that my doctor wants to try and none of them is manageable.
If my oncologist thinks I have more than six months to live, I will live as best I can, possibly enjoying the time I have left.
I spend hours reading and researching these issues. I don't jump to conclusions about my health. I do not want to die. I'd rather live, even a diminished life. But what I look forward to is too diminished for me to handle. These are sound decisions. I know I will be doubted and asked to think it through. I have. It's time.
Now the big question. Will my husband support me in this? He always says these decisions are mine. I need to go forward with my decisions. I am so ready. I am so calm about my decisions. I think medical people will suggest trying a few medical options to fix the problem. I'll try whatever but I know they won't work. I'd be happy if they did work. But trying will just cause more suffering. I'm done with suffering.
For the rest of my time here on earth, I will enjoy the things I really like to do. Reading, watching sports on TV, and writing. I will write to my husband and my son and my daughter in law and my sister and her husband. I love them all so much. I am not a touchy feely person but I will melt at the thought of leaving them. I am so glad my ability to write and think returned after we discovered the brain lesions that took so much of my cognitive function away. I have it back now and will tell you how I feel as best I can.
(I did tell Jerry about my decision process this morning. He did not go nuts, which I thought he might.)
This may be a shock to you but I am calm and at peace. I know you understand. You agree with the concept of death with dignity. I am so lucky that the NM law passed in time for me to use it. I'm pretty sure Matt and Sarah will understand. Not right away but in time.
This is an email I wrote to my sister just now. Haven't sent it yet. My health situation is quite unique. My problems are many and serious. You will probably never be in my position. I am meeting with my palliative doctor July 6. Then I will move forward.
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Jaycee I for one am in awe of you and respect and may I say support you completely. In your position or indeed when I am I hope that I can deal with things with the same strength and dignity that you display. Wishing you joy in the rest of your life and with your family
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Jaycee, my heart breaks for your suffering. I'm not shocked by your decision. I pray for comfort for you and for your family. Thank you for sharing your story with us. I'm looking forward to hearing more from you as you proceed down this path.
(((hugs)))
Carol
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Jaycee- I respect you in your decision. Another MBC poster on here has decided to stop treatment too. As I told her, please keep posting for as long as you can. And do what you enjoy for as long as you can. God bless you.
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Jaycee,
I hate that you needed to make this decision, but I completely understand why you have made the choice. I know you love life and living, but things have reached the point when so many factors are interfering with your ability to truly enjoy life or participate in it as you want to. Sometimes enough is enough.
You have given us so much through these boards. You probably underestimate your own impact on us, but we will never forget your unselfish support, understanding, and sharing of your heart-felt feelings and experiences.I know how hard you worked to push the End-of-Life Options Act in your state. It will benefit so many people you will never know or even meet. I admire you greatly for that feat.
I realize that some of the next steps will be difficult for your dh, but in his heart he knows how much you have suffered and how much you need relief. He will grieve the loss but take comfort in all the memories.
I look forward to reading your posts as you sit and read and watch sports on tv. Please keep us informed when you want to. I will be thinking about you.
Hugs and prayers from, Lynne
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Jaycee, thank you for your candor and clarity about this decision. I admire you for making a decision that is right for you, even though it may be hard for your loved ones to accept. You give me courage for my months (and years?) ahead and the decisions I will have to make.
I'm hoping that you have regained your ability to have restful sleep, as you return to the things that make life worth living and reject the things (treatment) that aren't life-nurturing. Hugs.0 -
Thank you all for your kind words. I'm really at a loss to know what will happen next. I will be glad to have you with me as I continue along this road. I will try to let you know what is happening. I have been very ready to let my feelings out.
Candy, do you think the person who decided to do this would like to talk to me? Maybe she would rather not. I would be happy to speak with her but maybe she would rather stay in a private place.
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Jaycee,
Your posts have always touched me because I appreciate your honesty and the candid way you express yourself. Wherever your path leads you may it be as peaceful as possible.
Caryn
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Jaycee,
I understand a respect whatever you decide when the time is right but it’s so difficult to read, especially about writing the letters to your family. Good thing I’m already drinking tonight because I am in tears. No one should suffer, ever. I wish you nothing but peace and ease moving forward and a good bowel movement too.
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Jaycee- I PM'd the poster and maybe she will contact you with a PM.
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Jaycee, my heart is breaking for you. You have tremendous courage and strength and I admire you so much. Gentle hugs to you; you are in my heart and I will be thinking of you in the days ahead. Enjoy your time doing the things that make you happy and content.
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Jaycee- i totally support whatever you want to do and I hope that your family does also. It is painfu to hear that you are suffering and I hope the palliative docs can help you.
Thinking of you
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Jaycee, I too am in tears from a mixture of emotions. 50sgirl wrote a beautiful post about how you probably underestimate your impact on us. You give so much to the forum. You are brave. We can always count on your honesty. We are here for you in spirit.
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