A place to talk death and dying issues
Comments
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Oh Shelley, I can't answer about your decision to tell your son about the progression. That is so tough to bear and I am truly not sure what to say on that. I guess just take what you want for him, and what he would want to know into consideration. Would it mean he would never go, or maybe just postpone a bit til perhaps could get more stable. Hope the answer will come to you soon.
As far as wanting to know how long left. Absolutely not. I am learning to deal with my newly Stage IV day by day. I don't currently make too many future plans except the practical ones like money, will etc. Otherwise, I have gone back to how I feel each day. If I feel OK, it's a good day. It's the only way I can go forward.
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Mara, I echo your sentiments. Stage IV people can't plan too much in advance because we just never know. TMs could be fine for months, along with stability in scans, and the next thing you know, you're back up Shit Creek without a paddle again.
We just live from one blood test, scan and dr appt to the next, while trying to fit some fun stuff in to take our minds off Mr. Cancer when we can.
Lita
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Reading through as much of this thread as I could in the last hour has demanded a reply. It's spoken directly to me, conceptually or spirituality at some points and very practically at others. I am going to come back to these posts for guidance as my disease progresses and as my acceptance of it broadens. uch wise and thoughtful words.
Thank you.
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testing my bio
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Most of my coping with and beginnings of acceptance has come directly from this thread. Long before I was Stage IV, near the start for me in May 2015, I lurked and read these threads vociferously. It helped me to see other people and how they were dealing with things, treatments etc. That is why I feel like I know some of these people even before being able to post in Stage IV. This thread definitely is valuable because a lot of this is stuff I am unable to talk about with the family yet. It is too fresh for them. It was mostly this thread and the Brain Mets Sisters I lurked in. (Little did I know I would become one of the Brain Mets Sisters)
Having the information here on SE's, learning about the different drugs, symptoms to ask about also has helped SO much. When my MO is talking, I can understand what she is talking about a lot better.
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Welcome, Franken. Sorry you are here, but this is a great group for support. Look forward to getting to know you.
Lita
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Thank you all for your responses, especially the poem, Stephanie. I ended up telling my son just the basics (progression of cancer to my legs/knees), and not the potential "what ifs". I will know more about my treatment going forward, after meeting with regular MO on Monday. Hope that it's good news, not ominous as it will be on Halloween! Scary!
I just can't expect my son to alter his life plan for me. I'm now thoroughly glad I have had so much time with him in the past 19 years and that we have a lot of memories to revisit. Good to have lived in the present as evidenced by the mounds of pictures I must still organize!
Take care of yourselves ladies!
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Barbe1958, great final resting place for your Dad. My son's Dad (my ex-husband, but still-friend) died unexpectedly last November, just one week after I had told my son about my Stage IV diagnosis. Talk about a one two punch. I felt so bad for my baby. This summer, he, his wife, and baby son drove up the California coast scattering some of his Dad's ashes in places that he would've loved, but never got to visit -the Redwoods etc. It brought him so much comfort. They did it, too, because they had decided to move back to Houston (yay!!!), even though I have been doing really, really well in the year since my diagnosis. (My 1 year diagnosis of recurrence anniversary was October 26). We are thrilled to have them back! Now we get to see our grandson grow and grow!
I will be cremated, but haven't picked an urn yet. My Dad was a Master Carpenter, and I really appreciate fine woodworking, so I'd like an affordable, but hand-crafted wooden urn. I want to take care of that well in advance, as well as paying a local Jewish funeral home to pick up my body and care for it until cremation. This will be a great gift for my family when the time comes. I may not die for years, but things can turn on a dime, so I want to start getting things ready. I got laid-off last year the same week as my diagnosis, so money is very tight and getting tighter by the day. Savings are already gone, so I need to make payment arrangements.
I do want some of my ashes scattered beneath Oakley, a Pin Oak tree that has grown up out of our critter cemetery in the back yard and want the cremains of my closest animal companions scattered with me, if it's okay with my husband. We are big animal lovers and have a large group of dog and cat companions. The Beloveds. I want to die at home like my Dad did, in his own bed with his animals around him.
It's good to have a place to talk about death. My gallows humor makes the living so uncomfortable, and neither my son nor my husband REALLY believes that I will die. I completely understand, but am *happy* to be here where I can write openly about it without causing anyone more pain for the nonce.
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KattySmith: We are kindred spirits! DH and I just went to Alta Mesa Cemetery to look over plots, niches, containers for cremated remains, etc. It wasn't morbid or creepy at all....as a St IV gal, it's my responsibility to get some of this out of the way to make it easier on my family after I pass. I think I'm going to go with the glass niche that you can place the urn in along with mementos/nic nacs. There'll be room for DH's urn, too, when the time comes. There are some very nice urns/containers you can get on line (the cemetery rep told us that urns are much cheaper if you get them elsewhere...the funeral home marks them up by more than 200%). Our first dog's remains are in a lovely, carved mahogany box. You may want to look into a nicely carved wooden box.
I agree with you: Things can turn on a dime. We may be doing ok now but three months from now? Who knows.
I wasn't sure if it was ok to cremate the body if you're Jewish. Maybe it's different depending on whether you're Orthodox, Reformed, Hassidic, etc. I know the Jewish faith has very strict rules on what to do with the body after death...you only have a certain # of days before it must be buried. Some Christian denominations don't allow cremation either. I don't see what the big deal is...you're dead! It's whatever their canon subscribes to, I guess. Coffin burials are more expensive than cremation, but cremation and placement in a mausoleum isn't cheap either, so that's why I have to make my decisions carefully.
Some families KEEP the urn at home, but then what happens when the primary caretaker of the urn passes? Will the descendants just scatter the ashes some where? What if you don't want that? So you have to make decisions BEFORE hand and let people know (also put it in the will). I like the idea of being in the same cemetery as my folks, that way my brothers can visit me any time they want to, (rain or shine because I'll be in the mausoleum), and not have to make a special appt w/DH to come over and see my urn.
Yes, it's very comforting to have a place to discuss these issues. Now I'll have to tell my DH and DD not to take me to Big Sur and roll my wheelchair off a cliff or there won't be a body to cremate....but a little antifreeze in my Diet Coke? Meh, still an option.
Lita
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Lita,
Rolling off a cliff in Big Sur? You could do worse.
We have no cliffs in Houston, only skyscrapers, so that's out!Cremation is frowned upon in Judaism, but it is becoming increasingly accepted, except among the Orthodox. I'm not very observant (devout), so it won't surprise anyone that I plan to be cremated. My body will have to be "disposed of" within 3 days, no embalming etc., and I will insist on that. If I arrange it through a Jewish Funeral home, there will be a room where friends/family can sit with my body to watch over it, sing, read Psalms until cremation. But, cost is an issue, so I might just arrange to picked up by the crematory staff.
We have several pretty wooden boxes with cremains of our dogs and cats already and many more to come. I need to add a note with my husband's will that their ashes should be mixed with his or sprinkled under our Oak tree if he's still living here.
It's so funny. When my Dad died 8 years ago, my sister flew back to her home in Florida. At the airport counter while checking in her baggage, she had to declare some human cremains, a hammer, and a handgun that had belonged to Daddy. The airline person didn't bat an eyelash.
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Katty: I like the idea of sprinkling ashes under the tree, too. There are some "green" options out there where they just put you in a biodegradable wooden coffin so you can decompose naturally, but that just doesn't sound appealing to me.
Yes, in Judaism more of the progressive branches are okaying cremation. It's not like it was 30-40 years ago. All of my Jewish friends' parents had "casket" burials back then. I remember sitting shiva with a dear college friend years ago (for her grandmother) and her saying that she didn't want a casket burial because of the expense. She wants to be cremated so her ashes can be scattered in more than one place. Of course, she's not practicing, so it's not really an issue for her.
I don't think any of my siblings will chose a casket burial. My oldest brother (who has congestive heart failure and COPD) wants to be cremated, too.
I'm not claustrophobic, but if I was, I don't think I'd want to be in a casket either. I should stop watching "The Walking Dead." Just think, you wake up as a zombie, and you spend the rest of eternity growling and thrashing around in a box. Too creepy.
Lita
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WORD FOR THE DAY
Trust yourself. Create the kind of self that you will be happy to live with all your life. ~ Golda Meir
xxx
I seem to be dying rather quickly now and have signed off most of my bco favorite places...will keep reading or ask friends to read to me this remaining topic, light. Do drop by, even if you only wish to read, see, feel and enjoy the uplifting encouragement shared there.
I joined bco a year ago for Rosevalley and this dying and death community. While our active, writing members have come and gone, it's been a place of healing, home and learning for me. I truly appreciate and am grateful for everyone who's helped me to grow to my current joy, acceptance and grateful release into life's last adventure.
The book's author, Maria Dancing Heart was an incredible chaplain to the the dying and bereaved for decades, then went and got hit by a car and instantly danced into life's last adventure called death.
btw, if we haven't met yet, I've been on hospice for nearly a year and lived with active cancer for 26 years now. I encourage an awareness and awakeness toward death while actively engaging life, joy and what matters most to you. That, more than drugs, treatments or holistic approaches, is my secret to a happy life and a regret-free life.
"Top 10 Regrets Of The Dying" by Bronnie Ware, a nurse in a terminal palliative care unit:
"Our greatest fear should not be of failure, but of succeeding at things in life that don't really matter.
1. I never pursued my dreams and aspirations.
2. I worked too much and never made time for my family.
3. I should have made more time for my friends.
4. I should have said 'I love you' a lot more.
5. I should have spoken my mind instead of holding back and resenting things.
6. I should have been the bigger person and resolved my problems.
7. I wish I had children.
8. I should have saved more money for my retirement.
9. Not having the courage to live truthfully.
10. Happiness is a Choice, I wish I knew that earlier.I shared the shorter version here on October 26.
In joy, delight, release and physical deterioration, Stephanie
PS, I love you.
PS#2, I can't write without a footnote, link or resource. Here's another one:
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Dear Stephanie, farewell. You are so beautiful. The world is
warmer, brighter, richer because of you. Thank you! Wish you an incredibly
sublime Grand Finale that is consistent with your life. You are forever in my memory.
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Au revoir, Stephanie, thank you , may your journey be full of love and peace.
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Stephanie may your continued journey be filled with beauty and love.
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Stephanie, I bid you farewell in this life, I sincerely hope your journey is filled with love by all the people you have touched in this life. You are definitely a courageous lady and have taught so much to others. Thank you for allowing us to be a part of your life.
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Stephanie, I am so glad to have known your presence and received your words here. Thank you for sharing your spirit with us all.
I wish you exquisite rejoicing in your metamorphosis and release, whenever it may come.0 -
With love and gratitude to a beautiful soul...
Rose
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Thank you dearest Stephanie for sharing your beautiful, thoughtful soul, and all that you have taught us. With love and peace from all of us at Breastcancer.org
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Oh shit! No one told me that "Mr Church" with Eddie Murphy was about a mom dying from bc! I burst into tears when she said she only had 6 mos to live at the very beginning of the film. No more spoilers...I'm going to plow thru it instead of watching the Cubs - I'll jinx them.
Lita
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Stephanie,
Gentleness, comfort and a release from pain/discomfort as you go forward. You have provided much food for thought as we all continue on this journey
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Just posted at Light From Around the World at bco. You too are my beloved community!
Thank you, Stephanie
xox
I still have minutes to write...looks like I won't physically die today, though definitely dying to many parts of life, undergoing dramatic inner upheaval invisible to most...ok, behavior is different. No interest in the outside world, even the presidential election as reported here in Deux and at Joe My God queer news site. It all looks like the same old to me.
Also, I had a few weeks of practical preparation, nesting, where I did everything from set-up my end of life care kit to writing copious instructions to teaching/learning caregivers how to navigate my cottage and personal care. I felt I had to cull out my caregivers to include only those I feel emotionally trusting to care for me how I wish. Was surprised to drop many old, intimate friends and even those who've taken good care of me for months now. Part of my intuitive weeding out was based on their ability to be centered on me, not themselves.
This is my final adventure of life and I've had to be a bit ruthless in getting an inner circle who can work well together to support me!
Really helps to trust the remaining caregivers to "get my back".
Life would be so much simpler, should I have a trusted mate who'd do these things.
But I live alone and have several caregivers, not many.
This is my grand finale.
I liken it to having trained for months for it, like Dancing With the Stars (I've never watched TV, but saw bits of the season's grand finale with my ex who was a ballroom dancer and taken with that episode. I read a book and came in periodically to cuddle with her. Why watch dancing, when one could let the music take one?)
Anyway, I'm ready to do and die and die trying to die.
Although physical death hasn't come to me, my dying on many levels culminates today. You can read about it on my personal blog update written a few hours ago titled, "Love You Forever, Bye for now." Just click my avatar or name to link to blog.
If you thought I wrote a lot at bco, you'd be surprised to learn not.
What would you do with the final minutes of your life?
Probably not a stream-of-consiousness writing like I've chosen.
Friends, I've learned so much about faith, service, light, love, life and death with you. I've learned about when members chose aggressive treatment out of fear of death and when they choose for love of life, often to serve those they love. Mothers of young and/or differently abled children still make me cry - I wish there were a time bank where I could donate hours of my life to these loved, loving and beloved women, mothers.
I understand so much better the fear and loathing of death that govern our modern culture and have appreciated your acceptance of me for showing my love and tending of both life and death.
Being able to tend that paradox for you to witness is a great joy. Watching it flow through my life only strengthens me.
If I survive the night, as I physically will, I expect to wake with my deeper, soul-spirit essence polished up a bit. What draws me are fun, play, laughter, being with those I love in a lighter way.
I can still sit with the mourning, grieving and loneliness who think they must endure without me. Long story, but many of my friends are well into their 60s and 70s and consider mortality the enemy, not an intimate friend.
Well, I've only minutes left and I want to spend them chuckling in prayer, promising to come home soon and to be patient and serve and laugh and play while I patiently wait.
Apologies in advance for typos and unclear thinking.
I've got better things to do than proof read. I will enjoy them loving and appreciating you too, dear friends of the soul. Thank you for your en-courage-ment.
Thank you for this place of love, caring and sharing, Stephanie
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o Stephanie you have been so honest about your experiences. I have learned so much about myself by reading your thoughts. You will be missed by so many but I understand death of this life will end your pain and allow you to be free finally. I wish we could have met but I feel we all know you very well through your writing. I wish one of us could be there , right now, to take care of all the details you are trying to finish up. You are loved. You are important. You made a difference to so many.
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Stephanie, Though I rarely ever post on this thread, I do read your lovely words of wisdom. I am wishing for you a pain free departure from this life, onward to whatever is next for us mere mortals. You have taught me much about dying well & I hope that with all your knowledge it serves you as it should. I will selfishly miss your posts, but want only the best for you. hugs til we "meet" again, cheers, dee
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Love, devotion and surrender......
We've all learned so much from you, dear Stephanie.
I had another long chat w/my oldest brother who has COPD and congestive heart failure. We talked a lot about death today. We are getting prepared for it. We both agree that no one really likes to talk about death in American culture. We pretend like it doesn't exist. It's the "enemy," not treated as a natural part of our life process. Ignorant individuals think they can defeat death and cheat death. They are fools. We will ALL die when our time comes. Spiritual people know that God already knows the exact day, hour, and second of our crossing over. It's in His hands. Nothing we do can change it. This doesn't mean we should just "give up" and stop living....it means we can live more fully and appreciatively. Find something of beauty and that points to the divine every day. The russet, burgundy leaves on the trees; the last autumn roses before the frost; squirrels scurrying to gather nuts; the joy of giggling pre-schoolers running down the sidewalk, so full of life and future promises.
Our pain is a divine thing, pre-ordained. It has its purpose. It has brought us here together. Even tho we aren't sitting in the same room, we have developed deep, powerful friendships that sustain us. We lift each other up. We share each others' burdens and triumphs. We survive one day at a time....sometimes one hour at a time. Our experiences and how we handle the pain and frustration of cancer are beacons of light to all those women who come behind us. They will learn from us, and they will mentor those who come after them and save them from total despair and isolation.
"And we know that all things work together for good for those who love God and are called according to His purpose." Romans 8:28
I'm having a rough time today. Whenever I have a Zometa infusion, the SEs usually peak on the 3rd and 4th day after. The Xeloda pills aren't helping either. I couldn't sleep last night. My stomach aches. The bland Cheerios and white bread don't help....urgent, explosive diarrhea is still gripping my intestines like a vice.
And yet I rejoice. I'm sitting in the La-Z-Boy because I dare not venture out to do an odd errand. (When it's this bad, even my Depends leak.) From my sliding glass window, I see my Japanese Maple just now starting to change color - the tips of the five-prong leaves are dipped in a golden-reddish brown; the last of my blood-red roses in bloom; a squirrel running across the fence; the peaceful, light snoring of my rescue Bulldog, sleeping beside me. The beauty of this autumn dusk overrides the pain in my abdomen momentarily.
I am still alive. I can still see, hear, feel, and walk across the floor with my cane. Death will not claim me today. When it does, I know the trees and the roses in Heaven will be even more beautiful than those I now behold. Thank you, Lord. You have blessed me. You said that there will be trials and tribulations in this world, pain and suffering. But You have overcome them. And I will come home to You when my time comes. Not before, not later.
Thank you, my dear sisters, for your love and support, May your SEs be minimal and your fatigue diminish with each passing day.
Blessings to you all, Lita
(Sofia, Autumn 2013, recovering from the removal of a pre-cancerous tumor, on her right hind foot.)
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Stephanie,
You have been a great teacher and provoked much thought. Hope for a gentle passage.
.
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I just wrote this and sent to my belly mets sisters. I want to share my joy with you, because it's so seldom spoken or written about by those at the end-of-life.
xxx
Sending great waves of love, appreciation and healing for all at bco.
Though I'm the sickest of us, am at death's doorstep medically speaking, I feel like I may be among those with the highest quality of life.
A recent turn of events has led to a rebirth of my full self. Have dropped the recent problem finding and problem solving approach to life. Have admitted my mind can't do that now.
Underneath is love, joy, fun, appreciation, gratitude, humor. I feel as though my light has emerged from beneath a bushel basket, to get all biblical on you.
I wish you such feelings while you continue to investigate and pursue aggressive treatment options.
This isn't most folks' path, but I'm having a wonderful time of life.
Of course, I'm healed by my Circle of Care, hospice team, spiritual practices of decades and god working through human acts of love, kindness and caring.
I am so grateful!!!
Loving kindness, Stephanie
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I know, we're the mere mortals and our carers are responsible for knowing this stuff, especially our palliative care, hospice and social workers, therapists and others interested in working with us as we are, with all our warts and beauty...but this helped me a lot to build a safe container for myself.
What is reassuring for me, would be too distant for others.What comforts them might be hovering, oppressive or controlling for me.
Understanding where I'm coming from, helps me to ask for what I need, not what others think I would need, based on their often very different life (early life) experience.
healing loving kindness all, Stephanie
xxx
Attachment Theory and Spirituality: Two Threads Converging in Palliative Care?
Research Article
Evidence-Based Complementary and Alternative Medicine
Volume 2013 (2013), Article ID 740291, 14 pages
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So beautiful and so true. Thank you so much Stephanie. With much love, The Mods
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Stephanie, you are amazing. Thank you for being so open and honest with us. You have taught us all so much. You have accomplished so much by leaving your foot print in each of our hearts. You will be forever missed but never forgotten. I pray for your peace and pain free days.
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