Light from around the world for LongTermSurvivor/Stephanie
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I'm fixin' to die. Really. For real this time.
Yes, I joined bco last November, nearly a month into hospice and many years past several prognoses. And I've been ill all through my time here.
Yet, now I'm literally falling apart physically and it's the most amazing adventure of an adventuresome life!
My hospice nurse visited yesterday and said I'm in transition - days, weeks, a couple of months. Not yet vigil time and no hospital bed. Hurray.
Now not to dismiss anyone else's experience, but I had four things I really didn't want to live through again:
* Losing my mindful awareness due to medications, brain metastasis or disease progression affecting body chemistry (hepatic encephalopathy).
* Suffocating or becoming dependent on supplemental O2.
* Another GI tract blockage with nausea and vomiting (though I'm happy to stop eating if necessary - no tube feedings!).
* Intractable, uncontrollable pain.
I seem to have avoided all thus far, though the pain wasn't well controlled. I'm now five days into methadone supplemented by drops of liquid morphine for breakthrough pain. Thanks to my liver's lead, I'm likely to avoid all these distressing things.
I will do all in my power, including enlisting at-home help, to stay out of hospitals, ERs, ICUs, intense medical interventions. I want to continue my low-impact dying!
But it's not so slow now. The process is speeding up. I'm full of joy, wonder, gratitude and awe.
Thank you, my friends.
I so appreciate you and the connections we've formed over the months.
Bye for now!
continued caring, Stephanie
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Stephanie I am grateful that your journey is doable and you are involved with actively dying in acceptance and peace. It is good to have enough pain meds and support. To have none of the air hunger, N/V or confusion. It's a blessing to slide slowly with awareness and you are blessed. May your last journey be a peaceful transition. Lots of love to you. rosevalley
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Sunset last night in the Delta. Thinking of you Stephanie.
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Thinking of you, Stephanie.
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Everyday I love you more, Stephanie. I hope that I have 1/100 of your grace and thoughtfulness when I reach the point that I am on Hospice. I am here with you everyday my cyberspace friend.
Brenda E
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Warm love and much appreciation for you from here, Stephanie.
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Stephanie: wishing you a peaceful exit. You have taught us so much about living and dying. Thank you! Will be thinking of you every night.
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Stephanie, as you become the light itself, may your transition be gentle, peaceful, and filled with wonder. You have filled so many of our lives with gratitude and love. Pleasant journey, my friend.
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What a blessing you are, Stephanie. May you be blessed by others as you have been here on these forums. Thank you for sharing your journey.
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Thinking of you everyday and wishing your transition to be smooth, peaceful, and gentle.
I hope you will continue to avoid your big four (loss of mindful awareness, suffocating, GI blockage or N/V issues, and uncontrollable pain), while your spirit and your body separate.
With much love,
Madelyn
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Stephanie,
I've only been here a short time but I also want to say thank you. Even when you were needing you have always been giving.
These following words remind me of what you've done:
"Lord, teach me how to love and live. That I may cheer each heart, and to my fellowman in need some blessing rich impart."
You are in my prayers.
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Hi Stephanie - I was thinking of how to you reply to you. Heck if I know. A couple things came to mind. 1.) Thank you for allowing us to share this path with you. 2.) I've often wondered what the "point" of life is. The only thing I can come up with is that it is our duty to leave things a bit better by making a difference. YOU have made a difference in my life and in the lives of others here at BCO. Thanks for stopping by and "sitting a spell" with us.
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The beautiful garden at The Old Mission San Luis Rey in Southern California.
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My DH and I walked the dog this evening as the rains let up. We were buzzed by hummingbirds and enjoyed the clouds and sunset. We stopped at one point to listen to morning doves calling. The rain drops on the plants sparkled in the fading sunlight. I thought Stephanie would appreciate this. Your insights, observations and appreciation of the natural world and your wonder and curiosity about life and death have touched us all. You shared your journey openly and honestly and I am grateful. I have thought more deeply because of ideas and readings you have shared. Thank you. I wish you peace on your journey. Lovingkindess to you. rosevalley
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I've only come to know you recently Stephanie but it was so immediately apparent that you yourself are a bright light. Wishing you every gentle transition
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A little update on me:
I so appreciate everyone's kind messages. It's amazing to me that I've had an impact here in just a few months.
Yet, I'm grateful for all our connections. Thank you for including me in the community.
Increasing symptoms include more pain & drugs (still low, I'm a cheap date!), dryness of entire body, reduced urine (pee) output, nausea (up early for help!) and sleep/fatigue. Probably other things too. I'm really spaced out for me - let's blame the anemia from my slow leak into abdomen. The hospice nurse thinks I'm heading into hepatorenal failure - a purportedly pleasant way to go, though I do expect some labor pains to get out of here dead.
My body is breaking down and while that's fascinating, more so are spiritual and emotional experiences.
I'll write about the former a bit, because I'm generally of the steadiest temperament - always reframing things in a positive way or stepping away from any potential conflict (rather be happy than right). But yesterday I got royally pissed off with different carers a half dozen times. Only one person heard about it and I wasn't angry with her. I wanted her to know because she's responsible for keeping my carers in line or informed (herding cats!).
In Traditional Chinese Medicine the liver corresponds to anger and my liver mets were diagnosed nearly 2.5 years ago. I've been expecting to get angry for all this time, but it takes a while for me to come to a boil.
One interesting and liberating thing was having a home visit from my hospice doctor (former palliative care doctor since 2011). He got angry, flushed and said bullshit - twice! This is someone who exhibits every bit of professional demeanor and self control. He's an award winning doctor. Now he wasn't calling me on my bullshit, though I'm sure I have plenty, but speaking of a loose cannon in the extended medical community. He doesn't want people to get hurt and he got in a protective mode toward patients and the vulnerable.
It was great for me to see another bridge builder setting limits or "healthy boundaries", as we say around here.
My balance humor are restored as I speak. Now it's time for me to eat, drink, drain and sleep. (sorry, rhyme attack).
Thank you for listening, my friends, Stephanie
Found this interesting quote in a longer essay on the Disappointment of Awakening:
As Jung so poignantly reminds us, we do not become enlightened by "imagining figures of light, but by making the darkness conscious." He went on to say that the integrating, non-negotiable journey of the dark and the light is one that is often "disagreeable" and thus would never be popular. - http://alovinghealingspace.blogspot.com/2016/06/th...
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God's speed to you Stephanie.
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Stephanie - this isn't very exciting compared to some of the other pictures posted here, but I wanted to share one of my peaceful place - my backyard pond and tiny little waterfall... where I have coffee every morning. Thinking of you. XO
Andi
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Stephanie, thank you for allowing us to share your experiences. Your honesty and overall willingness to "feel" and learn whatever you can is very helpful to a lot of us. I hope there can be less pain though. Gentle hugs your way.
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Stephanie, my world is a better place because of you. Brenda E
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Breanda - Yes so true. All the articles and links you have shared. I have listened to podcasts and read articles and explored all kinds of territory I knew nothing about because you took the time to present it and discuss it, deeply and with intention and wonder. I hope you are sleeping peacefully and your pain is controlled. Lovingkindness to you Stephanie. Pax.
rosevalley
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Stephanie, here's what I've been doing these last few weeks:
I'm singing in 62nd Annual Choir Festival "A Vision of Heaven" which will be in the Great Auditorium in Ocean Grove.
Here's some of the choir at the start of rehearsal. They are expecting about 800 singers on concert day. The conductor is the man on the right in the blue shirt with the wild hair.
Here's my view out to the Great Auditorium.
www.oceangrove.org
http://www.oceangrove.org/music-and-entertainment#/annual-choir-festival/
I wish I could bring you here for the concert as I'm sure you would love it!!
Sending "A vision of Heaven" your way, Madelyn
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Madelyn, that sounds awesome. Here is a picture where I walked yesterday. Our fabulous summers are Mother Nature's compensation for our long, cold winters.
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Thank you so much for staying connected with me and feeding my soul-spirit and social connections in so many beautiful ways!
I recently sat for photographs with my friend Gilles Frydman and I'm so grateful that images of my worn and weathered body are getting out in the world and touching people's hearts.
One of my personal goals is to be part of breaking of cultural taboos around dying and death, like I've been part of taboo breaking around cancer conversations.
Otherwise, I continue to physically diminish, yet am full, healed and at peace.
Am so grateful for that, my loving circle of care and my hospice team.
Tomorrow is my last anointing in my religious stream. The priest and several friends will come to celebrate the sacrament. The priest and I feared that I'd wait too late, so when he suggested doing it prophylactically, I agreed.
Friends at bco, I so hope this is helpful to you. We enrich one another's living and dying.
healing regards for all, Stephanie
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Stephanie I am holding you in the light and hope the sacraments and love from all your team here and at home continues to heal you into death. You have shown us how to die with grace and wonder. Blessings and lovingkindness to you. (((gentle hugs)))
rosevalley
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Happy Belated 60th Birthday Stephanie!
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Stephanie, you have and continue to give so much to us all. Much love to you today. Being on top of a mountain, whether in winter or summer, has always been a place of soul filling beauty, peace and tranquility for me. This is near Vail.
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The treasure chest is crumbling, but a glowing jewel remains within it.
Sending gentle hugs and a prayer your way, Stephanie.
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Much love being sent your way.
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Stephanie, were you with me during choir rehearsal this evening? I felt your presence as the sun burst through the window and onto my face as it was about to set.
Sending much love and light, and prayers and music your way.
Love, Madelyn.
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