A place to talk death and dying issues
Comments
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I may be able to squeak out a brief post before my phone loses power. Here's a link to Stephen and Ondrea Levine's website: http://levinetalks.com
Your kindness holds me softly in the midst of a tough week
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(((Bonnie))) Had to give you a hug for your post. You and Sass have been anchors here.
Anger is a normal part of this stage iv process as far as I'm concerned, and as long as we don't turn it on each other we should be allowed to rant and rave away! I've been here for awhile now and I've seen some backlash against angry posts over the years… some women just don't appreciate it (funny how it's much more accepted by men:(. But again, as long as it doesn't hurt others…
Sending everyone love tonight…
Rose.
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Oh my gosh, I never knew all caps meant yelling. I'm wondering how many times I have yelled at people over the years without knowing it.
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Brenda- nicely said... May he rest in the satisfaction of knowing how many he helped. Levine's writings have gotten me to think about things in many different lights and it's that "openness to experience" and sense of wonder and curiosity about life and dying and death that he teaches and speak to folks' hearts. What a legacy he leaves us. I too feel blessed to have wandered into his books quite by accident and was rewarded.
Today started out so well... I was careful to drink only clears and avoided the N/V that plagues me all day today. I pulled it together to get myself to a 50th wedding anniversary of some folks I greatly admire and love for being kind and genuine and true advocates of peace, social justice and love for humanity. I wanted to go and made it for 3 hours. I got to visit with some lovely folks I haven't seen in a long long time and celebrate this truly amazing couple.
There was quite a feast and I drank my boost over ice.. I was fine until I got home and drank some bullion.. puked it all up. Sigh.. even steady zofran didn't help. I had just taken reglan and a pain med and it all came up. ugh.. thank goodness for patches. Fentyl patches are a cancer patients friend. This is such a hard road sometimes. I didn't even get 500 calories today... how to keep it down??
Gatorgal- I learn stuff about "texting" and emails that i never knew all the time.. I have a teen and a 20 year old who gently teach me the meaning of new words and labels I knew nothing about. Language itself seems to morph right in front of me and faster than I can keep up. I have an old Websters Dictionary that I keep and haven't pitched because it's so funny! Bonnie I have enjoyed your posts for years thank you.
To Blondie and others ((((hugs)))) and hope you are comfortable. Love to all.
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Rose--so glad you got to go to the party to celebrate such an amazing couple. That took a lot of courage to get there and I'm so happy for you that it worked out well. I still sigh a heavy sigh when reading about your n/v. I very much wish it was different for you...not so hard.
OT--I was sick all last night and in my spare time away from the bathroom I was reading a post here and there. I clicked on someone's name and scrolled down to see what their last post was. (Don't know if anyone else clicks random things on this site)...but I came to a thread created by Marybe called "between to devil (the red one) and the deep blue sea." I read and read and read. First impression--how much love and genuine caring there was for Marybe. I looked at the dates she posted and realized as she was dying, I was being diagnosed. It's cyclical isn't it? And there were so many precious women supporting her, not knowing that their time was coming to an end also. I don't know what I'm trying to say. I guess I am getting more accepting of the thought of death is a part of life. I am also just sad to have lost so many wonderful people.
Sending love to all of you
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rose. Ensure makes a clear drink. It's got good protein but no fat. Might be an option. Maybe not as nutritionally sound as boost but if it would stay down better. Or there's a boost breeze but have to order online.
So glad you were able to get out. Old dictionaries are funny. Hope you are able to enjoy today.
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kjones. Hope you are feeling better
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Restful, comfortable, and peaceful Sunday to all, especially to our dear sisters who are on hospice! You are always in my warmest thoughts.
Peony from our garden last summer. Love Peony. They are tough!
The turkeys who live in our yard in last summer.
The head of the herd.0 -
kjones, I'm so happy to see Marybe's name here today (pronounced MARE-uh-bee, as she was always quick to explain; isn't that pretty?). She was the dearest friend I've ever had on BCO, one of the few I kept up with in private correspondence. She was, as you have seen, a brilliant, special soul. It was her passing that prompted me to stay away from the boards here for a long while, and I still miss her every time I log on.
Knowing Marybe, she is probably busy making sumptuous hors d'oeuvre for all the angels in heaven.
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Marybe was one of those special people you're lucky to have known in a lifetime - she was awesome - more energy than anyone - I will always remember when we "bet" her cookies (I of course forget what the bet was about) anyway sure enough I received a box of cookies up here in Canada - she paid off I think 10 other people - I still have her return mailing label on the corkboard above my computer - I miss her and so many others....Konakat too.
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I had a similar experience recently when I went back and found Hortense's contributions to this topic/thread. Instead of losing a beloved friend, I felt like I'd met someone I'd really enjoy after she's disappeared. Sort of a reverse ghost - I had to reach back in time to find her and recreate her in my mind's eye. And understand why she's in the hearts and good wishes of so many along with
Rosevalley, M360, Blondie, Brenda, Skylotus and others who continue to receive well wishes.
I joined bco especially for this topic/thread and for Rosevalley (many similarities in our cancer picture and loving kindness), but my first post was to Torridon, who didn't even make it to the D&D topic/thread before we learned of her death.
In a separate bco post, I wrote:
I've been searching the archives for reports on ascites, liver mets, etc. and notice that large numbers of us just disappear.
In other forums it's possible to assume members have graduated from treatment, but at the Stage IV forum, I guess you've died and haven't left word of your death through a survivor or forum friends. I try to puzzle it out working backwards from last appearance, last post, last word, last contact.
Are there official or unofficial ways that we keep in touch with one another, especially of those who disappear? Is there a separate commemorative forum honoring those who've died?
Supporting and caring for one another, we weave bonds to get us through. Even if death breaks the bonds of reading and writing, it will never break our bonds of caring and carrying one another in our hearts. Topic: Entering and Exiting at the Stage IV Forum
Thanks to many for orienting me there and also here!
Yet, I still wonder about members who participate in this thread. If Hortense just disappears, I assume she wanted it that way. But maybe some of us want to be kept better track of?
The Divine Mrs. M. told me/us about our Central Address book and it looks like I just qualify to add my contact information. Whew!
The loss/deaths of members are crushing for most of us and so often lead to withdrawal from group participation (speaking from my experience with in-person and other online support groups).
I've been thinking about how to ease this for many years and don't have a solution, just continued questions.
Meanwhile, I'm grateful to be here and for the kindness I've been shown.
Thank you, bco members, Stephanie
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Stephanie, so glad you're here. You're an inspiration!
Marybe was an amazing lady. Another long term survivor whose love for life was contagious. I didn't know her as well as lulubee and Sandy but she was the first person I interacted with on bco, and she was so supportive at a time when I really needed it! I will never forget her kindness.
Hope you feel better today, Kjones
And thinking of Rosevalley, Blondie, and all the other wonderful ladies on this thread.
Rose.
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Thinking of so many.... Here's a poem I just discovered today.
Survival: A Guide
(Cleopatra Mathis)
It's not easy living here, waiting to be charmed
If I do catch her move, the heron appears
by the first little scribble of green. Even in May
the crows want to own the place, and the heron, old bent thing,
spends hours looking like graying bark,
part of a dead trunk lying over opaque water.
She strikes the pose so long I begin to think
she's determined to make herself into something ordinary.
The small lakes continue their slide into bog and muck—
remember when they ran clear, an invisible spring
renewing the water? But the ducks stay longer, amusing
ruffle and chatter. I can be distracted.
to have no particular fear or hunger, her gaunt body
hinged haphazardly, a few gears unlocking
one wing, then another. More than a generation here
and every year more drab.
Once I called her blue heron, as in Great Blue,
true to a book— part myth, part childhood's color.
Older now, I see her plain: a mere surviving
against a weedy bank with fox dens
and the ruthless, overhead patrol.Some blind clockwork keeps her going.
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Brenda, love the blue heron and your poem gave me new eyes to look at them. I always look for them and am amazed at their patience as they wait for a nibble or two.
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I am sure Hortense is gone and I bid her peace and rest. I think of her fondly because of her amazing posts and pictures from her gorgeous yard. She posted frequently on Capriness' thread (Time for hospice and I am really scared) and I loved her observations, nature pictures and love of life. Hortense was special. Ihope her passing was calm and pain free. I did not know Marybe, but she sounds like another special spirit.
Kjones I hope you are feeling better. I hope all those Skylotus, M360, Blondie, LTS -Stephanie are comfortable tonight. I love the poem. herons are so fun to watch and aren't we all winding down. I love the pictures of the big wild turkey! Hi Patti hope you are well. Goodnight all.
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Listening to this program--Rethinking Death: TED Radio Hour--now. Thought some of you might be interested, too:
http://www.npr.org/programs/ted-radio-hour/464423367/rethinking-death
You can listen to all five sections, or choose whatever seems most intriguing. 1)What Do You Want to Do Before You Die? 2) Do We Need A New Narrative for Death? 3) Is There A Better Way to Be Buried? 4) Is Honesty the Best Policy When Someone Is Dying? 5) How Can We Prepare for A Graceful Death?
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Hugs to All of you amazing women here, and thank you for sharing your stories and experiences. Rosevalley, you made us giggle a bit re. the water! It's amazing what we do in our sleep! Also, the resources are really helpful to us as well!
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I've long engaged Stephen and Ondrea Levine's healing meditations. Healing into Life and Death provided me with meditations on pain (sensation floating in awareness), compassion, forgiveness and taking in medicine. Their work on life has improved my quality of life. I trust that their work on death will improve my quality of death.
Here are a couple of recent articles from Tricycle, a Buddhist magazine:
"it's not an oxymoron to talk about healthy dying."
I'm slowly moving into a new phase of the process - sleeping more and longer, experiencing more physical discomfort and can't quite keep my metaphorical feet on the ground to accomplish necessary tasks.
Fascinating journey, this!
Many blessings all, Stephanie
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Bless you, Stephanie. You are a light in this wilderness. I'm so glad you are here. May you rise above your discomfort and hold onto wonder and joy.
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Wish I felt like this was a learning experience... instead it's been a day long endurance puke fest. I have puked everything so hard at one point it came out my nose, all over my shirt and pants. I have managed to keep zip down today. My stomach hurts.. no meds. Went in to see PCP and get renewals. She said she would do home visits next.. too hard to go anywhere,too tired and too wiped out. I am just laying here running in normal saline and thankful I have that at least to soften this miserable journey.
There is an interesting article about cancer patients and psilocybin mushroom capsules helping ease anxiety about death and dying. It's being trialed around the East coast NYU, Hopkins etc.. Seems to aide tremendously their coping mechanisms, no matter which religion or philosophy they start with. Sounds promising hope the research continues. None available in this neck of the woods. I just pray for relief from barfing...
My kidneys are slowly shutting down and maybe that will be my ticket out, labs slowly look worse each month. How do colon cancer patients do this? It so sucks. So uncomfortable, just miserable day in and day out. Hope the rest of you are in much better shape.
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Oh dear Rosevalley, such a miserable day for you.
I have great compassion for you and your suffering Rose - wish I could alleviate it. Argh!
Glad you have the IV fluids and the doctor will come to you.
Am hoping you experience moments of rest and inner peace/well being in the midst of all this.
Sometimes I think that we're so used to holding on and making do that when worse comes to worst, we just keep on doing what we always do.
I'm working on letting go and going with the flow, but it is work to change approach this late in life.
Sending much love, my friend, Stephanie
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I would do hospice if i thought it would change anything, but I doubt it will. So I am waiting it out. What would they do that for the time being I can't do? It's not like they will empty my puke pitcher.. provide barf bags? Be here every 3 or 4 hours to dispose of them all night? They will come once a week, talk up a blue storm and leave me alone for the rest of the week. Who wants to chat when you're drooling and heaving? I can only type between episodes. My DH will be at work and I will puke in solitude in my room every 3 hours.. shuffle to the bathroom to empty it. take zofran every 4 hours. What would hospice do? I have my pain patches, the nausea is just unstopable. PCP knows, onc knows.. so what's new. zip. I am disgusted.
Lovingkindness to all.. May all who are suffering be comforted.
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Rosevalley,
I read often-but do not post. I think it is worth exploring what hospice may be able to do differently. You do not have to go with them, but at a minimum explore. Maybe you have and there is nothing better. It just seems you should not be this miserable,
Nel
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I am guessing hospice is radically different from place to place - my ds was in hospice in Montreal 13 years ago for 7 weeks and was waited on hand and foot the whole time - there were drs. there every day to make rounds and full time nursing, sometimes practical nurses and alway an rn on staff - it was a well run and beautiful place - hopefully you can get something better than once a week - once a week doesn't sound like hospice at all.
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90 days on hospice, a personal update
Dear friends, today marks my 13th week under at-home hospice care and I wanted to report on my personal experience, so we have a variety of pictures from different bco members to compare.
First, I've been slowly dying for a long time, using less and less aggressive approaches to the progressing cancer. I've incorporated many natural, holistic and alternative modalities over the past 25 years with cancer and find myself relying on them now more than ever. Hospice has been more holistic than my previously patched together care, because I have a team working for/with me to ensure my well being on all levels - medical, carers, social, spiritual and other.
I've never fought or battled cancer and call my approach slackadaisical, though absolutely committed to ensuring the highest possible quality of life for myself and my carers.
At the beginning, they offered me many services that I refused - home health aides, volunteer caregivers, massage, music, caregiver relief and I think there was even mention of visits with pets. I live on a farm in beautiful nature - so the last is unnecessary and the other things not yet necessary. While I don't have a hospital bed yet or other equipment, I've much appreciated that they bring all my medical supplies and most of my prescriptions, except those related to conditions that won't kill me (I think this how I keep getting letrazole/Femara - slipped through the cracks).
The nurse comes weekly and accesses my port so I can infuse Iscador as I have for the past 18 years - it saved my life when chemo failed in 1986! Love anthroposophic medicine! It isn't for slackers and requires great commitment and sacrifice, but worth every bit for me. The nurse and I also have long and ongoing conversations about many issues related to my care, dying and death and the state of the D&D world.
My social worker is an art therapist and counselor, and we get together every 2-3 weeks to process whatever is coming up for me.
And I've a spiritual care provider who comes about as frequently to help me with my overview and orientation as I approach death.
We've also arranged two special sessions - one with family members, social worker and spiritual care provider to express my needs and iron out old family dynamics. The other was with my Circle of Care comprised of friends who care for me and the nurse to empower the Circle further to care for my intimate bodily, social and spiritual needs.
I've self-managed my care for decades and am gradually letting go and turning over more and more to various carers, but still so value my privacy and autonomy.
I know that the team discusses me during their hospice team meetings and that feels reassuring rather than invasive or revealing. I am certain to share only that which I don't mind being repeated in a group.
Because I've been around the cancer, dying and death communities in my county for many years, I know several staff members personally and socially. I only share secrets that I don't mind everyone knowing.
What I see is that healing is still happening and that my life still has meaning. I'm still contributing to the greater world good in a variety of ways, though I'm pretty much confined to home and limited to a small number of visitors. My interest in life and others has only increased, though I demand ever greater/deeper levels of intimacy and authenticity in my relationships. Fortunately, my hospice team is similarly wired and we're going great, deep and broad in our explorations.
In short, I'm so grateful to reach this point in my cancer journey and to share it with these companions (literally, carriers of the bread).
I'm also grateful for bco and everyone I've met here. Your great kindness is comforting. And our shared knowing of the physical suffering and miseries of cancer is reassuring to me. I am not alone. Nor are you. If/when it comes time for you to consider (consult the stars) your own dying, I hope you'll remember my slow dying and will find the best possible soulutions for yourselves!
Thank you and warmest healing wishes always, Stephanie
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Rose, oh my. The picture you have painted is one of intense suffering, and my heart really is heavy thinking of you in that state. My mind is considering all sorts of possibilities for helping, but ultimately your question guides the way. "What could hospice do?" How will you ever know what hospice could do if you do not explore that possibility? That your PCP and your MO know about your situation and have not been able to offer more effective strategies to alleviate your suffering does not mean there are no strategies for alleviating your suffering. Hospice's primary goal is to provide comfort and hospice programs are responsible for helping you to explore all available strategies for finding relief. Please reconsider contacting one or more hospice programs in your area to find out how they might help you. Remember, if you choose hospice care, you can always decide to leave the hospice program if the care is unsatisfactory or transfer to another program if you prefer. Are you still receiving chemo and do not wish to forego chemo in order to receive hospice care? Some cancer therapies are provided through hospice as long as the goal is palliation. Your insurance company would be able to review which of your therapies would or would not be available to you under hospice care or even in addition to hospice care. I imagine it is challenging to explore any new options given how you feel, but finding relief from suffering is a challenge worth facing. If you cannot handle it on your own, could you ask someone to do it for you?
Stephanie, much gratitude to you for offering such a thought-provoking, open, kind, meaningful retelling of your "slow dying" and hospice experiences. More later, after much needed rest.
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I also read here but do not post, but feel that another voice for looking into hospice. My best friend died in November of colon cancer & she received at home hospice care & they were wonderful (if I can use that word for such a situation) The hospice Dr would visit once or twice a week & the hospice nurse came every second day to make sure that meds were doing their job, help her with a bath & personal needs. I know that's it's different everywhere, but it could make a difference.
Rosevalley, I want you to know that your posts have made such an impression on me, I'm sorry that you are going through this & everytime you post I am humbled by you, just as I was my friend Susan. Kindest regards, Dee
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I am copy-pasting the following from the book I am reading, Death of Cancer, by Dr. V. DeVita for the interest of those who have abdomen MBC and the treatment options are limited. I believe we patients have the right to try:
In the early 1970s, when I was chief of medicine at the NCI,
I saw a forty-nine-year-old perimenopausal patient with breast cancer. She was
the wife of a prominent science administrator at the NIH, so I was asked to
take care of her personally. She had already had a radical mastectomy elsewhere
a few years earlier, and because the lymph glands under her arm had been found
to have cancer cells in them, she had been put on adjuvant chemotherapy. But
that hadn’t worked, and now the cancer had appeared in her lungs and abdomen.
She had exhausted all the available drugs and was in bad shape. Further, I’d
met her socially when she was with her husband, a gruff, in-your-face kind of
guy with a deep bass voice and big shocks of unruly, curly white hair. He
didn’t like what we were doing at the NCI, and he tried to get her away from
us, as sick as she was. He was a typical data-driven, skeptical scientist, and
he gave me heat about doing anything further without “evidence” that it might
help her. I really felt like asking him why he hadn’t brought her in sooner, because
we did have data on how to treat such patients if we saw them earlier. She had
been admitted to a private room in the NIH Clinical Center on another service
that didn’t ordinarily admit cancer patients. When I first walked into her
room, I saw a woman who hardly resembled the one I had met at social events.
She was emaciated, pale, and deeply distressed. It was a depressing sight,
exacerbated by the colorless, depressing room with government-green metal walls
and green-and-black floor tiles. Her abdomen had been drained of fluid several
times, and the repeated punctures had caused an infection, so she was on
multiple antibiotics. She had what we called the six-tube sign— six different
bottles were hanging over her, with lines running into veins in her arms and
legs. She also had a tube in her nose to decompress her stomach. As residents,
we used to say if a patient had the six-tube sign, death was not too far
behind. She was having trouble breathing, and her abdomen was swollen. Her
blood pressure was unstable, and there was a question of whether or not we
should just let her go. But she wasn’t ready to give up. “Dr. DeVita, am I
going to die?” she said. I told her what she already knew. “You’re not in good
shape, but we’ll do everything we can to prevent you from dying.” At her stage
of illness, there was little in the way of treatments that had been tested and
found to be effective. I was operating in the never-never land of no data. But
if there is any chance of a good outcome, I like to give the patient the
benefit of the doubt. The fact that she was perimenopausal complicated things.
Hormones can sometimes be a useful treatment, but we don’t know whether they
are effective in women her age. She had never been treated with hormones, and
it was difficult to know whether we should add hormones or try to take them
away. So I suggested we irradiate her belly, because we might accomplish two
things at the same time: slowing down the fluid formation from her tumor, and
wiping out her ovaries. If her ovaries were still producing enough estrogen to
drive her tumor growth, knocking them out with radiation might result in an
antitumor effect by depriving the tumor of estrogen, which was driving the
hallmark proliferation. At the least, I didn’t think it would make her
situation worse. Her husband didn’t like the idea. “It sounds like you’re
grasping at straws,” he protested. “I am,” I said. The radiotherapist didn’t
like the idea, either. It was very difficult to get her to the radiation
therapy facility and treat her with all the tubes coming out of her body, and
both the radiotherapist and her husband thought it futile anyhow. But she
wanted it done, and her husband grudgingly agreed. The radiation slowed the
fluid formation pretty quickly, and over a period of several weeks her
infection went away. In a month, the tumors in her lungs disappeared. We looked
very hard to find the tumor in her abdomen, but that was gone, too. Six weeks
after being near death’s door, she went home, with no more treatment required. I
saw her regularly in the clinic as the years went by, but we never treated her
with anything again. I was afraid to. I didn’t know quite why she had responded
so brilliantly and I didn’t want to rock the boat. She led a normal life. We
weren’t sure what had happened or why the radiation made such a dramatic
difference. But each of these cases is something we can learn from. The
doubting oncologists would never have treated this woman. But to me, people are
not cases. Each person has a life, a family, a future— and the right to
whatever we can do. Ten years later, her tumor came roaring back in the same
places it had been before. This time, however, it was totally unresponsive to
any chemotherapy or further hormone management, and she died in a very short period
of time. It was an aggressive tumor before I saw her and just as aggressive, if
not more so, when it grew back. In between, it was dormant for ten untroubled
years.DeVita, Jr., Vincent T., M.D.; DeVita-Raeburn, Elizabeth
(2015-11-03). The Death of Cancer: After Fifty Years on the Front Lines of
Medicine, a Pioneering Oncologist Reveals Why the War on Cancer Is
Winnable--and How We Can Get There (pp. 272-274). Farrar, Straus and Giroux.
Kindle Edition.t
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Xavo, are you concerned about the posts from those of us who are encouraging Rose to explore hospice further? Please know that I have no vested interest in our dear Rose pursuing one option over another. What I hope for Rose is relief from suffering! I realize that is my hope, but it also sounds to be Rose's wish as well. If Rose were adamant that she did not wish to pursue hospice care because she was invested in pursuing any and all life prolonging options, I would honor that. It is the primary reason that I asked, " Are you still receiving chemo and do not wish to forego chemo in order to receive hospice care?"--an effort to understand her perspective on where she is at this point in her state of advanced illness. I also noted that "... your [Rose's] question guides the way [of my response]. 'What could hospice do?' " Many of us have significant experiences with hospice and wish for Rose to have the information about hospice that she needs in order to make the best possible decision that fits her belief system, values, wishes and needs.
I will also add that this topic is, indeed, about death and dying and that many people read this topic to learn about how people deal with end of life matters. Toward that end, I think that asking the question "What could hospice do?" opens the door for more discussion about hospice and whether it is an acceptable, preferable option for some. I support any person's "right to try" whatever they choose, but I also support that person's right to have as much information as possible to make the care decisions that are best for them.
Please know that I respect this space as a place for dialogue about dying and death, and that I realize many dialogues that take place involve individual lives. They also involve our BCO community as a whole, our larger ("in the real world") communities, our society, all the different systems that work or do not work well together, and so on. I welcome respectful dialogue and I hope this topic always creates a respectful, tolerant, compassionate space for such dialogue!
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HI Xavo,
Wow! What a story - an anecdote from the early 1970s that exemplifies the kind of horrific, heroic, high-tech, last-ditch medicine I was getting back then. It kinda scarred and scared me for life, as I developed MMTSD (medical mid-traumatic stress disorder - when you gotta keep going back to the people and places that hurt you).
Of course, I ran away from medicine and toward health, doing everything in my power to prevent future crises. But, I have a rare genetic condition that predisposed me to cancer and other problems and was later diagnosed with breast cancer in both breasts at age 34, in spite of my perfect cancer-prevention lifestyle. In my 25 years of working with cancer, I've chosen the lowest tech, least invasive, least heroic medical approaches and widely complemented them with integrative, holistic and alternative approaches. It's been my way and has served me well.
Stories like Dr. DeVita's remind me that I don't belong to his world, but to the world of health and well-being. Right now, hospice is serving my needs very well and I don't feel any need to pursue "alternatives" like this.
Yet, I understand that you see this story as hope for the distressed. May it land with those who it does serve well. And I do hope that extreme medical treatments like that described have improved during the past 40+ years!
Xavo, thank you for caring about us and for forwarding what you hope is good news, even if it's very old news.
May we all find healing and ease of well-being, Stephanie
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