A place to talk death and dying issues
Comments
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MissMonty, thank you for the book recommendation. That Good Night is on my things-to-read list.
I'm relatively young, and a few months ago I realized that the first death I experience close up might be my own. Weird. Because I have not been through the process with anyone else I don't know what to expect, although I am sure as with everything else in life it is highly individual. I started reading books about death and dying just to have some contextual information. I found Being Mortal by Atul Gawande to be helpful also.
Best wishes to everyone.
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MissMonty, I just downloaded the book and am reading it. I'm really appreciating it! Thank you so much for the recommendation.
The book is: That Good Night: Life and Medicine in the Eleventh Hour, by Sunita Puri (for those who don't want to scroll up to find it).
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Another comment on the above book: I'M LOVING IT! I tend to be a fast reader, but I want to slow down and savor this one. I'll be reading this one again, I'm sure.
The discussions she has with her patients are so appropriate to what my situation will eventually be. I think that if I can share some of her thoughts with my family (dad and sister), they will understand WHY I don't want to try anything and everything to keep me alive if it means destroying my quality of life.
I just read a part in the book where a long-time caregiver is telling the doctor that she doesn't want to "starve" her patient. The doctor explains that the patient's not eating is her own way of letting her body die. I'm not explaining it very well, but this doctor did.
When my mom was dying of Alzheimer's disease, she was in a wonderful care facility. She probably aspirated and got pneumonia. They took her to the hospital and treated her. When they brought her back, they wanted to feed her, but my dad said "No". She was basically non-responsive at that point. The administrator (a wonderful man from Africa) said, with tears in his eyes, that he couldn't watch her starve to death. The hospice nurse intervened and explained that feeding her was potentially more cruel as she could aspirate and end up with pneumonia again,
My mom got her wish shortly after that and just went to sleep. She died on her 85th birthday.
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I am also loving The Good Night. I've probably posted about this somewhere on BCO before but one of my favorites about cancr research is The First Cell by Azra Raza. I also read cancer memoirs, my favorite being The Unwinding of the Miracle.
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Jaycee, I’ve read numerous books, true stories of those with terminal illness, and in my opinion The Unwinding of a Miracle is the masterpiece of them all. Absolutely.
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Divine, I think you and I were both reading Unwinding when it first came out. Same comments ensued.
The bill is being heard in the last committee today sometime after 3 PM. They seem to squeeze in a tremendous number of bills/meetings in the last few days. These people are UNPAID so I need to quit complaining.
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The bill passed the last committee yesterday, 5-3. Again party lines, Dems for, Reps against. Our bill still needs to pass the full senate floor. There is one week left in the session. They decided to put all the bills left to pass the full senate floor on today's schedule, more than 100. It started at 11 AM but I haven't even looked yet. They will just keep hearing bills this week until they run out of time. Democracy in action.
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The NM End of Life Options bill passed on Sunday, March 14, 2021. Sorry I didn't tell you sooner but I have been decompressing since then. I just went numb. It passed? Really? Now for round two, fighting lawsuits for a few years. I am not prepared for that. I have some ideas circulating in my brain that won't go away. I'd like to take a break from all treatment for a few months. Seven years with cancer is a very long time. Maybe it is my age. I'm turning 72 next week. Is that enough? I understand people with young kids or older kids or a real purpose in life. But I feel like I am done, done suffering, done worrying about what this or that pain is. Could be a million things. You can't go to the doctor every day to find out. And I think I decided that cancer treatment is a form of torture. Why is it not better after all these years? We created several Covid vaccines in a few months and we can't treat cancer without horrible suffering, horrible damage to the body. Why not? The current situation with cancer is just accepted as the norm. I'm tired of that attitude. Patients with cancer just keep living longer and longer in various states of illness. We're getting used to it. We accept it as no big deal. It is a big deal if you live it every day for years. I studied psychology in college. In a field called "perception," I learned that when we see something over and over for a long period, it disappears. We don't see it anymore. If you leave yourself a note to do something and it just sits in the same place for a few weeks, you will forget to do that thing because you will not see the note, not really. Your brain will just say, "oh, that again. I've already seen that." So with cancer treatments, we just accept the horrible redundancy and no one ever asks WHY?
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Jaycee- I have been following your posts on here. I don't really know how I feel about End of Life Options or what my State says about the subject. I have not researched it. I am glad you had a win though. But I am posting this because of what you said. From your profile, it says you are on Ibrance/Femara. Is that still current? Have you had any progression recently? I have been on Ibrance/Femara for 3 1/2 years. I have been stable. I get my next scans on Monday. But, I too have had thoughts about "what if I say stop to the treatments". I know I need to stay on the meds if I am stable. Duh. But the niggling thoughts are there. I can feel so horrid at times with these meds. Is it a cumulative effect after being on these meds continuously for years? But then I think about how this is the "easy" treatment and some treatments I read on here are much worse.
I will continue with treatment, but it does make you take pause as to when is enough enough.
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Jaycee - Ive seen a lot of presentations lately about how this technology and that data approach mean we can now make VACCINES faster for the pandemics....of the future! Like hold up here guys. How often are you planning on pandemics coming around? How about we run some of these cancer figures through those hot shot algorithms and processing capabilities? How about we apply new thinking and process to developing new care approaches rather than just another drug combo that eeks out 4 months of life. What about better imaging modalities or approaches so we can catch the cancers even earlier (or for younger ladies) and at a cheaper price? But hey, governments won't pay for that but they WILL pay for vaccines (clearly) so...
The information campaigns and charities or whatever have their purpose, but even they seem tired and old-fashioned now.
Congrats on your success,by the way!
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Sondra,
I posted something similar to your comment on another thread (or maybe this one?) a while ago. In the US, we are freaked out over 538,000 deaths from Covid. And we should be. But cancer kills over 600k people in the US each and every year. Why aren't we concerned about that, as a policy issue? And if these vaccines could be brought to fruition in a relatively short period, why can't we do the same for cancer? Or even some types of cancer -- which would probably lead to more progress in all types of cancer.
When I posted before, I think some folks hit the nail on the head -- cancer is big money. Think about it. These drugs, treatments, etc. generate a ton of $$. Big Pharma knows this. So they do the slow walk on the cancer stuff. It's really upsetting to all of us, I'm sure.
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Jaycee, thank you for all your incredible work to help get the End of Life Options bill passed into law in NM. It will provide so many people with an option that can hopefully give a little relief that it simply IS an option, if they want it.
I hear you about cancer treatments being torturous. You have been receiving them for so many years now, and yeah, why aren't they better at this point? People in my life seem thrilled at the possibility I could live for many years with this disease, but it scares me at times. I appreciate your post a lot.
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Jaycee, I read that it passed the other day in a news feed and immediately thought “Yay! Jaycee did it! I know you weren’t alone but I appreciate your impact. With some luck, maybe Texas will go along too, eventually.
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Jaycee, congratulations on the passage of the bill. You helped make a difference and should be very proud of yourself. Don't downplay your efforts (something women tend to do).
I can understand your feeling depleted after all the effort you put in to making sure the voices of those with terminal illness are heard on the matter of death with dignity; heard and validated. I'm always aware I only have so much energy and am rather stingy about how I use it. In younger years, I'd jump into all kinds of things in the name of positive change, but I'm more of an observer now and don't feel guilty about it.
Does your age have something to do with how you feel? Possibly. I'm a decade younger than you and feel older than my years due to mbc. I can only imagine dealing with this if I were ten years older. I do a good job pacing myself, working smarter not harder, so I don't think people in my life realize the extent that I've had to adapt my life to work around the disease. You make good points about the state of cancer treatment these days, how never-ending but never curing has sort of become the norm.
Here's the FB post from the NM end of life coalition about the bill passage:
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Jaycee, you’ve done an impactful job, congratulations! Thank you for all your hard working, now with the DWD, people will be given a basic option! to make decision for themselves when they want to when they need to...
about purpose of life/ living with mbc, it is something that comes to all of us mind one way or another... when I think about I carry a terminal disease in my body and nobody understands even a bit of the damage, feeling, weakness, disappointment, se, insurance, bad doctors, scanxiety etc. million times this thought crosses my mind ‘so what’s the point’... but you proved that there are many impactful efforts we can do as systems (eg legislative system) need changes to operate better and to be more useful. you made a huge change, the system needs you in order to work better, because nobody understands us better than us. you identified one of many failures in the system and put effort to solve it and you did it, hats off, it is Jaycee’s purpose: to help law makers to understand a problem, to invite outsiders to change their perspectives to see a problem. I know it is exhausting path but the efforts lead to success. Thanks to pandemic new terminology, now people here and there use ‘new normal’ a lot. I have to say we are experiencing “our new normal” everyday, in fact our new normal keeps changing really depending on scans, treatments, se and and and... and part of our new normal is to fix problems like what you see in the legislative system...
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Candy, I have had small/mixed/confusing progression in Oct. and Jan. One new spot each. I need to read/study the last few pet reports and get my take before looking for MO's take. His wife is due to have a baby in the next week so he is distracted. My nurse told me he said he was "not in the mood to argue with me" last time I was there. He is leaning toward Xeloda and I am not. I did switch from letrozole to Faslodex for my hormonal in Oct. I've had one Pet since then and I still have no idea what is going on. Maybe another new spot. I can't seem to make myself care. Faslodex seems to build up in your system and creates side effects a little more each month. I have a problem talking to doctors about side effects because I've been smacked down so many times when I do. I need to change my profile.
Thanks for all the congrats on the bill. There were many people involved and all worked very hard. Maybe I am just having a letdown from that. I have been reading and working with the death topic for over a year. It consumes you. When I was in college, my mom attempted suicide when she was working at a funeral home. I keep reading on the topic because it interests me. Right now, I am reading a book titled A Chosen Death by Lonny Shavelson written in 1995. I like the history.
Bev, I remember that post of yours. I also read an article by a writer/cancer patient a few days ago but can't find the reference now. She was wondering why the treatments are so harsh. I wish I could find it but it is one of those things you see on Google News, never to be seen again.
Divine, no offense, but I hope I never see a web page that looks like that again. The organizers would send out a "Legislative Alert" at every small step in the process. I think we got up to number 23 or something. I would look it up but I deleted them all.
The new spots are hip/back area and I have new pain there in the last few days. ES Tylenol takes care of it for now. When my vaccine kicks in next week, I will visit (in person) my palliative care team. They asked for all my emails to the legislators and I sent them, thinking I was helping their students. I really think I wanted them to know how I feel about death.
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BevJen,
I hear you but bear in mind that cancer is not contagious and the mortality rose swiftly and unexpectedly. Moreover, cancer is not a virus and it appears that there are not only differences in how cancer is treated based on many, many factors, including primary site of origin, etc. Cancer is far more complex than this virus. The vaccines were not developed from scratch, i.e. they did not start developing them once the virus was identified. They have been working on vaccines for Corona viruses for sometime and just had to tweak it to work on Covid19 so they had a good head start.
Cancer turns out to be very complicated and in many cases we simply don’t know what causes cancers to develop whereas we know which virus causes Covid19 and it’s variants. I know we are all frustrated and I wish it was different. Curing cancer, because it is not one monolithic disease is a continuing challenge.
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jaycee49-I think that a lot of my exhaustion is psychic. Every month dealing with labs, tumor marker numbers, scans etc. Wondering when the other shoe will drop. I am running out of oral options and really hate all the interventions. I realize others will die and we cancer oahave all this advance knowledge- but, 10 years of cancer and the worry or it and what life is about has tired me out. I am making beautiful quilts and I suppose that has its purpose, but.....
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Your posts got me so interested in this, I started following the progress via a local online news source. I was so happy to hear, and my first thoughts also were of you. This was a proud accomplishment. Heartiest congratulations!
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Jaycee amazing accomplishment. I’m so happy this passed. I was following your journey. The majority of bills die, so your hard work and perseverance made it happen
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Jaycee, well done. You are our voice in this darkness. BTW I have been on Xeloda since June and have been NEAD since September. It is very tolerable for me. I am 68 and just want to see my grandkids grow a little older before I pass. My purpose seems to be to help my five tear-old granddaughter navigate through Zoom kindergarten school while her mom graduates from nursing school. It is the little things that keep me going.
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Great outcome Jaycee,
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jaycee,
I don’t follow this thread regularly so forgive my late congrats on your hard work. Congratulations 🎉! Well done and all of those concerned with this issue are grateful.
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This is so well written and really communicates. I too want to have the option.
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Jaycee,
I just ran across this thread. Congratulations on your hard work on helping to getting get the DWD law passed in NM. I think I read every post and reply. Who so impressed. Thank you from everyone that will benefit.
Linda
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I'm working on a big mind shift/decision, and I'd like to use you all as my thought partner.
I've been living with Stage IV 7 years (diagnosed Stage III 8 years ago). My only metastases are to bone, spine initially, now ribs, hips, shoulders (Dec 2020). I've made my way through all the targeted therapies, hormonal therapies, oral chemo over the last 7 years and now just chemo is left. I went on Taxotere infusions in Dec and have completed 4 cycles. My lesions have all disappeared (yay!!!) and my bone pain is gone. Med Onc wants me to do 2 more cycles just to strengthen the remission. However, I am exhausted and sick to the core with this chemo; I'm mostly a zombie and so very weak -- can't even walk down the driveway. Small decision: Do I say no to infusions #5 and #6?
And I am exhausted to the soul with feeling vaguely shitty all the time for 7 years. Taxotere is the final straw in this awareness that I haven't been me for a very long time. I'm seriously considering stopping all treatment and just getting my body and spirit back and living my life and relaxing my earnest care of this disease. My wife and I want to do so many things together (both retired now). I just want to see what 65+ feels like without all the drugs. Big decision: Do I stop trying to quell each new metastasis and let it do what it's going to do, knowing that I don't want to do chemo anymore?
Any insights? Words of wisdom? Suggestions?
Thanks in advance, wonderful community.
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Pearlgirl, I would do one more, then see if your up for the last chemo but that’s just me. Then maybe a treatment break for a few weeks or couple of months while you go vacation or something.
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Pearl-girl, I like the idea of maybe just one more! But also, given your attitude, how about saying goodbye forever to traditional chemo but open to try some therapies only if they are tolerable ? Like Enhertu (if you did not try that already- it is a chemo but has a really good response rate and is targeted) or Verzenio as monotherapy? The Androgen receptor booster drug Enobosarm had a good response on heavily-treated patients and its a muscle-bone booster that bodybuilders use. Not FDA approved yet but you could get it on trial or just try it OTC. How about the immunotherapy trial that KattySmith did- or any immunotherapy trial, that could be a game-changer! Not much for side effects. I get being so sick of all of this, especially with the chemo wearing you down, but it might be free-ing to be taking something but still only willing to keep on with it if you are feeling good.
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Pearl-girl, I'm the dose reduction advocate. I have been so miserable on all full dose chemos, but with one dose reduction I perk back up. I've been on taxol or abraxane for over 1 year now & life is *good*. Full dose I feel like crap and I'm so fatigued that I'm sleeping all the time, & in pain. Dose reduced and with proper pain meds, I'm ticking along & doing things. So how about a dose reduction for the last two and then see?
Also, if you decide to stop be sure you have the talk with your MO on how it will play out. Sometimes people underestimate how sick they'll feel or how fast it can progress. Depending on your lab values etc, your best bet for having time to do stuff might be to continue some sort of treatment. I've known people who did get some nice time off treatment but it doesn't always work out that way, kwim?
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Pearl~. I have been lucky enough to have remission for four and half years. I do take oral chemo and am that zombie you speak of. Same bone Mets only. I also sometimes want to just say , take me off of it all and see what these bone mets do? I had a lengthy break from my chemo as well. I Believe I would want the break, but if you're able get the remaining two knowing you did all you could. Bottom line it's your comfort level . My break was wonderful and you sound stable. 7 years. That's wonderful. I wish you many more. Hugs to you strong woman. You'll make the best choice for you and your partner.
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