A place to talk death and dying issues
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A story that is at times discouraging and unsurprising, one that describes how aid in dying remains elusive even for many who live in states (US) where such aid is legal, and a reminder of the importance of expanding our end of life conversations and of fighting for the right to choose one's own dignified path toward death:
http://www.medscape.com/viewarticle/875031
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Anyone heard from Barbe? I just pm'd her. She hasn't posted since December. Hope she's ok.
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Lita, Barb was active on a thread that got into a heated debate. Maybe she is taking a break. I hope she is well.
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Thanks, Mom. I know she has other health concerns as well.
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Hi all I'm here to update about my brother. We all had quite a scare last night. For the past couple of days he's had a cough so bad that almost stops his breathing. But yesterday he coughed so much and felt so weak that he passed out and to be completely honest, for those 5 seconds, I didn't know if he was going to wake up. We called an ambulance and they did a CT scan of his lungs, it was all clear. So it's not pneumonia, or blood clot, or lung mets. Personally I think it's a buildup of lactic acid that's causing him to be so weak, which is something not all of our family understands. His lactic acid level was 2.7 when it's supposed to be less than 1.9. That's after they had given him some oxygen in the ambulance. Doctors want to do a brain MRI even though the head CT was clear, because of his facial numbness and hearing loss. I don't know if doing rads to the brain is worth it.
His oncologist spoke with me one on one the other day and said that it might be best if he considers hospice care at this point. Ibrance/Faslodex are "gentle" enough to keep taking for now, but if the PET shows progression in March, there are no more options that he could try. So we are all praying that the meds do their job. Thank you all for listening xo
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Loving-is-Living, Sounds like your brother and you all had quite a scare! Given his symptoms, I would certainly recommend a Brain MRI in addition to the CT. My Brain MRIs have provided lots more detail than the CTs whenever I've had both. MRIs do not involve radiation, by the way (if I'm understanding your rads comment). I wonder also whether your brother's oncologist has actually talked to your brother about accessing hospice care and what signs the oncologist is seeing that suggest hospice care is more appropriate? And also, does your brother have palliative care? Palliative care involvement can really make a difference in quality of life, given its holistic perspective and focus on symptom management, and it can help with making a transition to hospice care if/when your brother decides that might be the best option. You sound like a caring sister. Do you and your brother have the kind of relationship in which you can talk about these kinds of issues openly?
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Hi Brenda. We thought an MRI would be better too, but since he's claustrophobic, we're planning on an open MRI. His onc didn't want to order a regular MRI and ask for sedation, since the techs wouldn't want to sedate someone who is already feeling weak. His onc has talked to him about his choice on stopping treatment many times. He doesn't want to stop, out of fear that stopping = immediate painful death, which is not really true. It hurts me to talk about it sometimes but these are things we need to face as a family. A lot of our family still thinks that stage IV can be cured. I mean, anything is possible, and I do believe that miracles are possible, but we need to be realistic at some point. I still try to be positive and hopeful but we need to have things in place to make him comfortable. He actually was on palliative care for a few months, but it was so many unnecessary visits that overwhelmed him and they only made things worse by changing around with his meds. They were a good resource though, with nurse visits and an on call doctor. We'll see if we can get him back on soon. Thanks so much for reading and for your advice.
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Another update: He's doing much better at the hospital. Platelets are low (45, down from 120 at admission), so they want to watch that. It's not low enough for infusion. His oncologist stopped by and said that she was surprised to see him looking better than when he was in her office last week. No Ibrance for now until platelets improve and the cough goes away. He's on limited pain meds (codeine #3 at most), a huge improvement compared to when he was on IV dilaudid!
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Hi, again, Loving-is-Living,
I know you must be relieved to observe your brother's improvement! Given that he is still in hospital, have you considered the possibility of asking your brother and his oncologist for a family meeting before he is discharged? I assume he has a social worker assigned to him, and I wonder if the hospital also has a palliative care team available, even if just for the in patient stay. Sometimes a client and family may find themselves on a slippery slope of change and decline, then suddenly at a place that is very distressing for all, at which point they wonder, "How did we get to this point?", "What should we have done differently?", "Why didn't someone tell us how little time there was and how we might all work together to make sure our loved one had the best quality of life possible as s/he prepared for the end of life?", and so on. Even if a family meeting is not arranged it might be helpful to ask your brother, "What's your understanding of where you are in your disease process?", "What are your goals for care? For the rest of your life?", "Are there any questions you would like to ask but have been afraid to do so?", "Are there things you don't feel comfortable discussing? And if so, are you uncomfortable because you don't want us to think you have given up hope or because you don't want to cause us emotional pain?" Some important things to remember are to be present as fully as possible, try not to get attached to any particular outcome whether it is a private conversation or a family meeting, be as honest as you can, LISTEN, and pledge your support no matter what he chooses. I will be thinking of you and your family and hoping that you all along with care providers can come together to build a plan that takes into consideration your brother's values and goals. It is not enough to rely on hope that everything will work out on its own, it's important to have a plan--even a loose and flexible one. In lovingkindness....
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Brendatrue...thank you so much. I'm also Stage IV.
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Lita, you are most welcome!
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Thanks so much Brenda, I will take your advice and we will plan to have that discussion with him while we still can. He was released last Thursday but I didn't get a chance to post. I know what you mean about "how did we get here", because since November, he has declined a lot, and we've adjusted to this "new normal" that isn't normal at all. Before November, he hadn't been in the hospital in a year and a half. And since then, he's been in over 5 times. He doesn't want to sign a DNR, I know that much, even though I think he should. It shows how an open conversation is so important right now. Thank you again and I will check back here soon. Hugs.
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Good topic for discussion - I gave my doctor a warning look that shut her trap when she started to tell me not to worry, being NED somewhere in the gray area of 3C or beyond with NED, how people go for years, even decades....blah blah blah. But what about the ones who don't? I want to know that if / when I end up in an end state she would medicate the hell out of me or get me access (my family) to do the right thing.
If I fight my ass off that I will not be rewarded with a Holocaust ending. I do not mean to use that term and offend anyone - I think of the victims and it challenges me to live better, bolder, beyond diagnosis. At least I can hug my loved ones, make arrangements, live a while (months? years). But the thought of suffering and hovering with death and pooping in a portable toilet next to my bed while my husband and young son/teenager are with me or even in the same house infuriates me. I don't want to be looked at as a human skeleton and feel that sense of relief when you walked out of a room after seeing my grandmother and aunt who lingered. I don't think I could jump off a bridge but here in Ohio is a damn shame we don't have death with dignity (yet).
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7of9, this is why we have to lobby law makers to get death with dignity laws passed. Our dogs and cats get better treatment than we get. We don't make them linger and suffer like humans. Makes me livid with rage.
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ditto lita 57
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7of9
Like you I have had a conversation with my onc, even NED for 3+ years. Because we are pretty sure we know how this will end. Laid the groundwork for not doing chemo on the way to the funeral home, that I will stop treatment when it seems to be doing more harm than good, as my goal is quality over quantity. He was good with the conversation - just laying the groundwork!
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I received an update from Stephanie's blog:
We want to let you know about a conference about dying and death that was very close to Stephanie’s heart. She herself participated in and organized similar conferences and was very active in The Christian Community and a founding member of The Sacred Threshold Guild, both of which are co-sponsoring this conference. Many of Stephanie’s close friends who were with her during and after her death are helping to organize this conference and keeping her in their hearts as they do it.
The Threshold of Life and Death: Bringing Death Home
Friday, March 10, from 7 pm to 9 pm and Saturday, March 11, from 1 pm to 5 pm
Summerfield Waldorf School & Farm, Sophia Hall,
655 Willowside Road, Santa Rosa, CA
Gain a spiritual understanding and anthroposophical perspective of what is involved in this sacred time. Caring for those we love during and after death can be simple, thoughtful and deeply meaningful. It is one of the ways we can heal ourselves and our community.
a conference co-sponsored by
The Christian Community in Santa Rosa and The Sacred Threshold Guild
There are more details on Stephanie's blog.
https://www.mylifeline.org/StephanieSugars/updates/update/1520866
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How wonderful that Stephanie is still teaching us, through her friends, after her death.
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Hello. I'm new to this site but was so very happy to see this thread. I need to say... I'm scared. I was an ER trauma nurse for 18 years but until my initial surprise diagnosis in 2013 I knew next to nothing about oncology. Since then I've learned a lot but for the last year I've been trying to deal with the big change from remission to stage 4 in multiple bones.
My oncologist is kind and caring but...( I hope this comes out right) too positive? I know only what I can look up myself when it comes to anything negative. He is encouraging and supportive only to the point of talking about what we are doing and what we can try next but he won't answer my difficult questions. He's very intelligent and I know he knows what he's talking about but what is scaring me is what he won't talk about. I'm the kind who wants to know. Everything. Probably too much but it somehow comforts me. I can handle things. Even bad things. What I hate is the unknown. While I do know "nobody really knows" and everyone is unique. I need information to plan and cope and cover my bases so to speak. However, like when I asked about my PET scan he told me first all the places I had no mets then brushed over all the bones onvolve by asking "well where do you have pain" and a discussion on treating my significant hypercalcemia at the time. He wouldn't even give me a copy of the results he always does with labs and scans. He just hugged me and said not to worry about it everything is being taken care of. I went to the hospital records dept. and signed out my own copy... when I ask prognosis questions he will reply with something like I can't even give you a ballpark, you're young and strong and new things to try come available all the time....
I'm not trying to focus on death but I can't stop thinking about it. Everything I'm reading about bone mets prognosis wise is pretty grim and I have it in my pubic bones, pelvis, femur, and T5-T8... I just turned 42. I have 3 children ages 15, 13, and 6. I know I'll want way more time than I will likely get but I don't know if I'm looking at 3 years or 10 and I'm not sure how to cope with such nonspecifics. I have no support people I can talk to about death and dying. My husband left almost a year ago and my parents have already lost my sister in a horrible accident. I feel like I'm telling everyone what they want to hear all the time but what about what I need to hear? I can't change drs again because this one is my 3rd and there aren't others in my "network. I already know what I will want to do at specific times in the process but not knowing where I am in the process is so frustrating for me. I can't go by how I feel because some days I hurt so much I could say my body is just done but other days... I manage fine.... will I get to see my children graduate high school? I need 12 more years for that for my little one. But I don't even know if I'll see my oldest graduate in 3. After all the nights of homework assistance and science fair projects and valentine box making etc I've ranted at least one!! Lol. Seriously though how do I cope with this HUGE unknown?
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Marie - Welcome to this site but sorry for the reasons that bring you here. You're at the right place, you will have more information on these boards than any doc will give you. Stage IV dx is a shock and is a roller coaster emotionally and physically, especially in the first few months. Your doc is right, he cannot even give you a ballpark because no one knows. He's also right that new meds come out. Don't look at stats, they are outdated and do not take into account the new meds and they are melting pot of everything. Bone only mets have a very good prognosis. The unknown is part of this path and it's the hardest to deal with. It does however get easier with time. "Scanxiety" is a faithful companion unfortunately. Keep all copies of your reports should you wish to have a second opinion at some point. As hard as it is, try to focus living in the moment, make plans and projects. Heck, I still have a hard time doing that but I try as much as I can. We all understand what you're going through and it's the best place to rant and speak our true feelings. I encourage you to visit the bone mets thread when you're ready. We're a great bunch of women who support each other and exchange precious information.
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Marie, 1st very sorry that you are here, but glad you found us. I'm a little confused...your bio says stage 4 in 2013, but it sounds like you became metastatic within the last year. You may want to clarify that so we can better help you.
Are you taking anything yet for your mets?
Yes, mets are scary, but they can be managed. Women ARE living longer now, some well past 10 years if they just have bone mets. Even women with both bone and organ mets are living past 5 years. However, I can definitely understand your anxiety. Are there any live support groups you can attend?
This is overwhelming for sure, but we are here to help support you. Don't blame your dr. He really can't say much because everyone's life trajectory with this wretched disease will be different depending on cancer type, resistance to chemo, etc.
It's OK to be angry, shocked and concerned. FEEL your emotions. Don't run away from them. There is healing in that. Also do what you can to keep the rest of yourself healthy as far as eating, sleep, exercise. Make sure you get a handle on the pain. Pain makes you want to give up because it is so draining. Radiation to problem areas works wonders. Ten months ago, I was in a wheel chair because of horrible spinal mets and compression fractures. Now I only use a cane when I go outside the house (for additional balance, and it keeps people from bumping into me).
There is a bone mets thread also. Those ladies are very warm and can be a great resource for you.
Keep us up to date,
Lita
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Marie sweetie, that is so much living to do. What these wonderful ladies told you it's so true.
The fact that you can't confide in your parents and being a single parent for sure weighs you down, and all seems so hard. But, yes, when you can, join the mets thread and you will get a lot of help there. You will get support, it doesn't always have to be something horrible happening. And you could learn a lot also.
Can you feel the hugs? Trying not to smother you. I'll pm you.
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Lita57--I'm sorry, I was off BC board for a little while the last six months, and I have lost track of Patty. Do you remember the Patty I'm talking about. She's young and has children? I'm hoping she's ok, can't find her on the boards. Thanks, Shelley in A
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Thank you so much
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Hello
Thank you for your reply!! I was a little confused in the bio question answer section. Lol. I was diagnosed with stage 3 invasive breast cancer in 2013. I wasn't diagnosed with the bone metastasis until 2016. Nearly a year ago. There was unfortunately an 8 month delay in any dr appointments after my first year and a half of treatments due to losing my insurance after a surprise divorce and applying for Medicaid then finding new drs etc then getting things approved. Access to care has been almost as difficult as the care itself! They aren't sure how long it took for my scans to go from NED to multiple bone mets. But my cancer markers in the blood work never did slow down and are still increasing slightly every month. Right now I'm getting spinal radiation, Zomeda for the hypercalcemia (that's probably spelled wrong) and taking anti inflammatory medications and some holistic approaches that seem to help with my mobility and pain as well as pool activities. Otherwise, I'm still on the Tamoxifen train and haven't had to change it up yet.
I will look into the bone mets threads and thank you again so much!
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I appreciate this advice and support more than words can say! Thank you!!
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I've been reading about a new book by Frank Ostaseski, The Five Invitations, in which he offers the wisdom gleaned from his work with people at the end of their lives to help people live their lives more fully and to deepen their understanding about death and dying. Here's a trailer for the book:
https://www.youtube.com/watch?v=5S41fhGCDX0
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brenda...saw the trailer. Very intriguing.
Many cities in the US have started organizing monthly or quarterly "Death cafes" where people get together and discuss the process of death and dying and what it has to teach us. I went to one in December. Incidentally, I was the only one there who actually had a terminal illness.
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SosMarie how you doing sweetie??
Brendatrue love what Machado wrote, I'll incorporate it. So i followed your link and ended up spending an hr! I went from one to another of his videos. Terrific stuff. Ordered his book. I am in the middle of listening to the long one...
I am not advertising for everyone, it's just really interesting, and no I am not a Buddhist.
Lita actually, it seems like a gr8 idea. You know, my daughter throws things in the conversation, why should i buy this, how can I make plans, what's the point, her anger with God, i learned a long while ago to not poo pooh it away, it's hard, because I think that would be my first reaction, it was, but I backed off real fast. She wants to curse, she curses. She wants to hope I am there. When she is angry I just listen. I am not the same person from 10 yrs ago, that's NOT my style, but life makes you soften up, everything does not fit in the damn 2 x 2.
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I went to one death cafe also. Not too impressed. I was also the only terminal person there. Won't be going back
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I was hoping someone might know what happens to my social security benefits after I die. All those years of paying in and I'll never get to collect... Is there a way to make sure my children get some of the money?
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