A place to talk death and dying issues
Comments
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Stephanie--rarely in life do people have the privilege to "meet" someone who is so extraordinary! You have blessed us, and so many more to come, with your honesty and sharing of soooooo many resources...even on deaths bed. You have served us well and it is evident yours is a life well lived. Much love and light to you
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Kjones, You said that so eloquently and so much better than I could. Stephanie has touched more of us than she could possibly know. Thank you for putting it into words for all of us! God bless!
Diane
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MammaRay, I've done that with family as well as friends. I don't want them to watch me deteriorate but am willing to continue to communicate on Facebook and texting/email. I get it. I sat around both parent's death beds and don't want anyone doing that for me.
I just had lunch with some old high school friends (first and now last time in last 10 years) and they kept saying how good I looked. I actually have aged better than them. Doesn't mean I don't have stage IV cancer.....
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Barbe: I always smile at them and say, "Thank you...just because you're dying doesn't mean you can't look good."
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mammaray, I try to think how I would handle a friend with a terminal dx. I have friends who have lost their children. They have let me walk in the fire with them, it has been sad and beautiful all at the same time. If you have friends who can walk along side you and just be real, it's such a beautiful thing. I have let my friends know what I would like as my journey goes on, it has been amazing how many are all in....those I needed to let go of , well, that happened rather quickly. People quickly show true colors . Hope you find well caring friends:)
Stephanie, you are a beautiful person, whom we will all cherish forever:)
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Judy Abrams, a sweet, brilliant, and raucous rabbi here in Houston died suddenly two years ago (heart disease) in her early 50ies, right after seeing her younger daughter start medical school. Rabbi Judy had such life-force and was a brilliant and animated teacher. About six months before her death, she was hospitalized for back surgery and had suffered quite a bit of pain, from what I gathered.
She wrote this after she was released and went home, ""Moses was much on my mind in the hospital. I saw him up on that mountaintop, retreating from leadership and life. And I was reminded once again how good God is to give us death. There is an end to pain. We could be in a system wherein the pain never ends. God gave us this enormous blessing: one way or another, the pain stops. Either we are healed or we die."
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i too have distances myself from friends and family to protect them. Esp dh. If e can get mad at me now !maybe it won't hurt so much to lose me. Crazy thinking? Probably but I so want to protect his heart
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ive been out a few days. Anybody k ow about Stephanie !?
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I haven't seen Stephanie post today but if you hit her name it says she was last seen today. So she checked in but maybe didn't have the energy to post. We're thinking of you Stephanie. (((Hugs)))
Nice to see you Patty.
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I try to keep up with my precious friends here.
And so appreciate you all at the DND family, my belly mets sisters and very precious light from around the world.
I read people and things I want to reply to and just can't.
Thanks for calling me out. I was in waiting and reading mode.
And very ill now very weak very thin and have had some computer trouble.
It's fun to wake up I read your message Patty and yours, Rose Valley. I love you so much and so many more here besides. I just can't keep up.
Cannot even keep my family and friends updated because things are moving so fast and I am moving so slow.
Dying is so much work I never imagined!
Nothing at all like the movies!
No final sweet moments of I'm gone.
but a million and one details aso many personalities since I do not have a partner or single caregiver but rather a circle of people caring for me.
Sounds really luxurious I know to just have people checking on me all the time but it gets exhausting to keep switching personality connections and to adjust to people coming and going from my tiny cottage. Still I would not be just happy anywhere else as I am here at home with the people I love surrounding me and caring for me. And people like you still caring.
thank you l!
Will try to write more.
Just remember love is all you need and you can show it and feel it and give it I live it and be in it. I encourage you to express love in your own unique ways.
yes I protected many people for many years and I still do.
It took me a while to realize that I was ultimately protecting myself from energy that didn't work for me. It's so hard to see people so hurt and grieving and sad. Of course I withdrew.
Nighty night now and sweet dreams, Stephanie
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You are so loved here, Stephanie. Incredibly so. You're leaving a part of yourself with all of us and I, for one, am very grateful for your love and inspirations.
JJ
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Stephanie. Glad to hear from you. Your courage and love is amazing. Many hugs to you
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Sweet dreams Stephanie.
Thank you for all you have shared here. It is invaluable. Thank you to everyone else too.
I'm now on the final journey too as I have no treatments left, so it's time to treat symptoms & keep me comfortable - hopefully some qol. I've got LM so I don't think I'll get too long tbh.
It has been so hard putting my affairs in order, I think I've been in denial, but I'd better get on to everything quick smart...
All of you on this journey- I wish you comfort and love
kt
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kt1966- I was wondering if after the recent earth quake if you are ok? How did your area do? I am sure that added to the amount of stress you are experiencing being at the end of treatments. I understand about the denial getting affairs in order. I have managed to get some things I wanted done but not nearly enough. DH doesn't want to talk much about it either.
I am also dancing the edge and wondering about QOL looking at sticking around for the kids during the holidays. Then blissfully leaving. More and more this is an existential crisis wanting to stick around. I went to pick up cat food at the pet store and hurried to the car so I could throw up several times. That was my big adventure out today and the drive through at the drug store. There is so little I seem to be able to get done. Everything makes me so tired, draining ascites, belly and joint pain, puking - it just never stops. My 16 year old cat is also at the end of his life, hyper thyroid and kidney failure he follows me around the house and wants to just lay on me and purr. We comfort each other. Spending our last days being together. Maybe getting nothing done is ok too.
Peace to all.
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Stephanie, you are awesome. Thank you for sharing your life with us. You have taught us so much. I do hope you feel surrounded by love from everyone around the world.
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Rosevalley, You TOO are an inspiration...my God, with all that pain and PUKING in the car, too, bless your heart!
You talked about "sticking around for the kids during the holidays. Then blissfully leaving." I know Oregon has End of Life options (CA just voted ours in, and they went into effect in June), are you considering that? I'm still somewhat at the beginning of my "experience," (I hate using the word 'journey' cuz I certainly didn't consult a travel agent and book a reservation for this trip to hell), but I have liver and pancreas mets, along w/bone mets, muscle tissue mets and mets to other areas in my abdomen, adrenals, bladder, etc. MO said the more areas that are affected, the worse it will be since just having them in one area (like only the bones) is easier to deal with. Each area w/mets is its own little colony, and I learned from Dr. Sledge (Stanford University) at the conference I attended that each area can act differently. When the cells divide from the parent cancer cell, they can each have their OWN unique mutations (ergo, playing whack a mole when it comes to knocking back each strand of mutations). I try not to think too much about it right now, but I know it will be brutal.
I'm not sure if I'll take the barbiturate cocktail when the time comes or not. We have to jump thru a lot of hoops here in CA to get it, so one must plan ahead early and get all the psych stuff and outside dr consults out of the way (we need TWO drs outside our own providers to CONFIRM we're terminal and have all the written paperwork in place). I haven't even started getting my affairs in order yet...I have to update the will, get my POLST paperwork submitted, sign over my personal bank accts to DH, (btw, I think ALL women should have their own bank accounts just in case...CA has a high divorce rate, and you just never know - even tho DH and I have been together for 28 years), review my life insurance, etc.
It's so hard...knowing we will leave our kids, spouses and friends. My love and prayers are with you, Rosevalley, and everyone here as we will all take the Bataan Death March much sooner than we ever anticipated thanks to Mr. Cancer.
(((Hugs)))
Lita
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Lita57- I already purchased my DWD meds back in March. (Catholic health insurance wouldn't pay for them even though it's the law in Oregon cost 3,068.00 for seconal) I never expected to live this long. My youngest kid has mental health issues and leaving her in the hands of the school and DH is oh so very hard. I feel sorry for DH as she can be a handful and I wouldn't want to be a single parent for love nor money. I was supposed to check out by now but timing is never "good" for kids. We see her psychiatrist after Thanksgiving and I will ask about grief and processing. I woke this morning to puking my guts up and curling up to zofran and going back to sleep. I have since eaten and drunk liquids and no N/V. Late evening is tough for me as I throw up nearly every night. I have chemo tomorrow and hope to get through Thanksgiving with a brave face.
I never feel good anymore, draining gallons of fluid off a week, aching, puking, intestinal bloating and gas and constant fullness. It's not much of a life. Just getting through it. I would like to take my DWD meds after Thanksgiving. Two of my kids have birthdays in Dec and then there is Christmas. I don't want to ruin their birthdays. I don't want any gifts except the gift of being cancer free/ dying. Try telling your 3 daughters you want that for Christmas. Ho ho holiday cheer it is not. It's hard to keep doing this as I don't want to do anything anymore except sleep... no pain or misery when you are asleep. My will is done, life insurance goes to DH with his promise to split between the girls when they are older. I have already been giving things away. I worry about who will let the dog in and out since it is too cold and wet for her to be out all day... 11 years old and bad arthritis in the shoulder. One old cat (age 16) is on the way out too. I am waiting to put him down and bury him under the garden bench where he spent so many days sunning himself. Dear old Percy cat and I will leave together. Heck they can bury us both under the garden bench I don't care. I will be cremated first!
Yuck it has gotten so dark and is about to cloud burst... ugh.
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MammaRay- I am 58. I have read some of your posts and know you have had a rough time of it lately too. I hope things are better. I hope your son is doing well. ((Hugs)) There is a part of me that wants to slog through to Jan I just can't imagine so many more weeks. I tossed up lunch.. this puking is really getting me down. That and the constant abdominal aching..gas and distention. Cancer just sucks.
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My Dad wanted his wife to have a full year of death benefits. He died of lung cancer on January 2nd. Holidays were over and it's a depressing time of year anyway. I'd probably do the same.
As for a Funeral, I'm really beginning to dig my heels in. No one visits now so screw them. I don't want my kids and grands sitting around my death bed. I want the grands remembering NaNa who sat on the floor and actually played with them!
Want to be cremated anyway so no viewing either. Thinking of having a celebration of death while I'm not too bad. Just the timing....
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kt. Sorry to hear you are out of options. Surely your mind is swimming. Hugs.
Another horrible day for me. Lots of vomiting and diarrhea and pain. So weak.
Stephani. If you are able to lurker have help read for you --- wanted to let you know you are still in my prayers. Prayers for a peaceful cross over. Much love.
Rose oh sweet rose. Wish I could hug you and stephanie and be of any help. I hear you about timing and kids. Oh the exhaustion just to drive to town. Def 1 thing wipes me put even if its just a drive thru. That is if I don't wear out and have to nap after getting myself ready. Never thought I would go in public with no makeup but now I don't care
Dh and I just talked again tonight about ending it. We discuss it regularly and I am glad he is willing to talk thru the hurt. We discussed everything I've written down for him again. Everything he needs to do such as call SSD , Insurance, passwords and household bills ( I have done them forever He has no idea what we pay and to whom.) My notes are incredibly detailed. Should be easy to complete. He too is exhausted. It's been so hard physically and mentally for him. His plate is full. I def don't want to check out at Christmas or New Years. then it's dh bday. then it's ds1 bday. Then ds,2 bday ugh. Guess there is no perfect time. Actually wish it was beginning of summer vacation so they don't have to get right back to school. but that's 6 months from now. Not sure I can wait 6 long months. I have most affairs in order but just haven't been able to make photo albums with descriptions for each son. I also want to write them a few letters. Just like marriage, birth of child etc it's just to hard to even think about much less get started. sorry rambling on. So hard not to be in control. Ugh
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Just reading through the posts here... kt, Patty, Stephanie, Rose... so many familiar names... I wish you all so much peace. I was recently diagnosed with LM like kt. I'm homebound and can't walk or swallow very well. I'm getting chemo and grateful for that but I also see the truth. I've learned so much here over the years. Just trying to wrap my brain around all of this. It's especially hard because of the holidays and I can't even eat let ailone have energy to celebrate! Oh well... on we go... Love to you all...
Rose.
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Oh I realized today that I stay signed in to bco, but don't read often or much and seldom reply, in spite of good intentions and ideas
I'm actively dying and my focus is shifting.
Take care, my friends, Stephanie
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Stephanie, I hope you are surrounded by people you love, I pray for pain free days. Thank you for sharing your life with us.
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Stephanie, wishing you a sweet, cool, and gentle transition.
Our love will follow you.
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Stephanie, peace be with you
In Blackwater Woods
Look, the trees
are turning
their own bodies
into pillarsof light,
are giving off the rich
fragrance of cinnamon
and fulfillment,the long tapers
of cattails
are bursting and floating away over
the blue shouldersof the ponds,
and every pond,
no matter what its
name is, isnameless now.
Every year
everything
I have ever learnedin my lifetime
leads back to this: the fires
and the black river of loss
whose other sideis salvation,
whose meaning
none of us will ever know.
To live in this worldyou must be able
to do three things:
to love what is mortal;
to hold itagainst your bones knowing
your own life depends on it;
and, when the time comes to let it go,
to let it go.–Mary Oliver (American Primitive, 1983)
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Since Stephanie signed off BCO, I'm reposting the most recent post from Stephanie's blog:
zone
Posted by Stephanie on November 18, 2016 11:54 amAll will be well and all will be well and every kind of thing shall be well.” (Julian of Norwich)
peace, ease, release, be love.
tension, fear, adventure, companionship, fart of poop, commode.
ativan, uneven loud breathing, not eating.
shit is my earthly focus, no coverage for nights and thanksgiving and two days around. Paid caregivers turn up.
Know my care circle members will not be able to stay around the hospital bedside (due today between noon & 2).
Paid caregivers will come to care for me.
Yet, when I'm more actively dying and have lost conscious, more circle members and close beloveds will gather too.
My treasured hospice nurse Thalia says I'm in the red zone. I say, I'm emerging through death's door into eternity, clear light and beauty.
Body fails - cannot sit without aid, cannot stand without a strong body assisting me, cannot walk without assistance, Bed has chux and soft cloth loose diapers for frequent productive farts. I'm drinking water from a syringe and a bit of food with magnesium.
All is well!
All is love and light and that allows me to hold the physical pain, the fear, the concern, the letttig go.
Just be, Stephanie
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Thanks for the update. Please keep us posted as we hold Stephanie dearly in our prayers.
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It won't be long now, dearest Stephanie. You will be home soon, and free from the pain of these earthly ties.
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Thank you
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