Light from around the world for LongTermSurvivor/Stephanie
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So thankful to hear this. Holding you close in my thoughts and prayers.
My church is doing a reprise of last Sunday's "A Vision of Heaven" choir festival in St. Catharine's Church. I will sing with the choir except for the one song that has flute accompaniment. In my heart, I'm dedicating my performance to all the people here at BCO and I'm lifting up and dedicating the flute song, "Leaning on Everlasting Arms" especially for you.
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Stephanie, I don't know where you live in CA, but I thought of you a lot and said many prayers for you during the few days we just spent experiencing the beauty and healing power of the rugged Pacific coast.
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This is a rant - read at your own peril!
Just after 6 AM - writing from Moonlight Farm, eastern Sonoma County -
It's a cool, foggy morning after many days of heat. Though the Pacific coast is 40 miles distant, the sea air arrives in gentle breeze and gray capped sky. There will likely be no more rain in my lifetime, unless I survive until November when the annual rains begin again. So the moist fog is a gentle caress on my parched skin. The sky carries the scents of eucalyptus, soil, dry grass and flowers. Real life aromatherapy. The scent of the blooming lemon tree beneath my bedroom window - I wish you could share it too!
For those who think of California as a warm and sunny place - well, it is. Sort of. But the northern part of the coast is blessed by rain, fog and wind - a natural response to the warmer inland summer heat.
As Mark Twain said, "The coldest winter I ever spent was a summer in San Francisco.
So, I'm personally really, really dry this morning.
My watermelon belly delivered no ascites in today's daily drain. Or lack of drain!
It's Saturday and the usual hospice staff will return at 9 AM on Monday.
I do have options!
* I can try irrigating myself with the previously used equipment - but I shudder to think of injecting germs into my beleaguered belly.
* I can call the hospice answering service and wait to hear from a nurse who likely hasn't irrigated a stuck drain line and doesn't have new, sterile equipment. But can maybe come to my house to do what?
* I can dose up on antiemetics, methadone and morphine, let my belly hang over my belt line and waddle through the days until my knowledgable nurse returns.
* I can stop eating and just sip fluids. Be grateful for the watermelon chunks and ginger-lemon ice. Be grateful we're between heat waves. Stick my head in a book.
* It's rather hopeless to do much research now. I've run ascites into the ground - most of the medical literature focuses on cirrhosis of the liver.
* I can lean into friends at a more decent hour - my caring circle comes at noon today.
Yesterday, I posted an excellent piece on the illness trajectory of MBC.
https://community.breastcancer.org/forum/8/topics/...
This morning, I'm plotting my own course on my own timeline and see my drain first clogged on July 4, then July 5, then July 14 and again today. Had irrigation (irritation?) procedures on July 5th and 14th.
What will this weekend bring?
Just having a rant.
And keeping an open mind and heart.
Thank you for reading.It's wonderful to feel not so all alone with all of this.
surrounding us all with loving, healing light, Stephanie
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Stephanie,
What an eloquent rant it is. I'm sorry you're stuck in the middle of a weekend with few options. Perhaps some assistance will appear where you least expect it, or perhaps a trip to urgent care will offer relief.
Thinking of you this beautiful morning.
Amy
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Stephanie,
Beautiful rant, from a beautiful heart.
XOXO
Andrea
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Rant away It was the most tame rant. Having a malfunctioning drain sucks. May you suck ice and stay comfortable...what ever it takes more methadone, antiemetics.. be as comfortable as you can. Blessings on you as you wait through Sunday. May the butterflies and birds put on a show to keep your mind off the drain. Much love your way. hugs
rosevalley
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A lovely rant and I'm grateful that your caring friends are coming to visit soon.
cb
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thinking of you with best, best wishes
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One day at a time
One step at a time
One breath at a time
One drain at a time
Got the line to flow at 2 PM today
Fingers crossed that it will go again next time and the next and the next until there is no more next
Great gratitude for the good wishes!
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Prayers answered again!! I second that wish that it keeps going until there are no more next times. Is your pain controlled and other symptoms?
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Yeah, prayers answered. I hope that you continue to be comfortable through this journey.
If you feel up for it, you can watch and listen to our concert, on Sunday, July 17, at 7:00 pm ET/4:00 PT at St. Catharine's Church, which includes many songs from the "A Vision of Heaven" choir festival. I will sing with the choir except for the one song that has flute accompaniment. In my heart, I'm dedicating my performance to all the people here at BCO and I'm lifting up and dedicating the flute song, "Leaning on Everlasting Arms" especially for you.
http://livestream.com/accounts/11714562/events/3786245
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Holding you up in prayer for you to know that you are cared for all over the world. Hugs.
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hi Stephanie, sending light and love from Wisconsin.
If you're up for a music video, here's one of my favorites: Beethoven's Ode to Joy flashmob.
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Stephanie, sending prayers that you may feel God's healing gracious mercy.You are an inspiration to all here.
Faith (in the future)
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Stephanie,
I think of you daily. Just wanted to tell you.
Lettsnge
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Dear bco friends,
It's too early to call my local friends and I have an unsolvable problem this morning.
This morning, my implanted drain line refuses to give up ascites fluid for the fifth time in less than two weeks.
At first, my hospice team and I suspected a clogged line...as it is 11 months old and, as Rosevalley and I often note, most folks with cancer who have implanted ascites drains die within a month. We don't know how long the lines last, because patients expire sooner than they do.
Thinking it was a clog, we cleared it three times and jostled it into working once.
This morning, though, I'm thinking it's not the line itself that's clogged or that the ascites have diminished (big hard belly = not).
I'm thinking that the ratio of tumor to fluid has shifted and that the fluid is pocketed or blocked by tumor. Maybe tumor is blocking the physical drain (it's an 8" long french drain tunneling deep into my pelvis).
On hospice, I'm allowed to have palliative measures like paracentesis, drain line clearance and drain line replacement.
I don't think I'm allowed to have imaging exams like an ultrasound exam that could distinguish fluid from tumor.
Meanwhile, I'm here at home waiting for my hospice nurse to begin her workweek in an hour. Then I can call and ask her to come and please help me make a plan.
Am I just trying to postpone the inevitable again?
My life is a death-defying act. Illness and medical complications, not accidents and injuries, have brought me close to the edge of life and death so often. Maybe this is it. Finally, really it. There may be no more delays.
Or there may be more magic rabbits pulled out of black magic top hats.
Meanwhile, there are people to love, air to breath, nature to appreciate, quiet and calm surrounding me.
And you listening. Thank you!
I feel stronger and more centered already.
loving kindness and gratitude, Stephanie
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Oh, Stephanie, I truly believe there are more rabbits! I hope your Hospice nurse will have them handy in her bag for you or just a phone call away. Big loving hugs to you! This may sound selfish, but I can't imagine these boards without you!
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We are listening Stephanie. I have no suggestions to offer you. It does seem possible if the liver is enlarged and the intestines crunched that the fluid might be pocketed. I don't know what to say. I have been praying for your comfort. If you aren't taking much fluid in you might not produce much now. it amazes me how much ascites fluid I produce when 1/2 gets puked and the other half manages to go through. It doesn't seem like a lot. The body has a magic Chinese tea pot of fluid- never seems to empty. It's a weird pathology for sure...malignant ascites.
May your hospice team pull a rabbit. I will be thinking of you. Lots of lovingkindness your way.
rosevalley
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Oh, Stephanie, I'm so sorry it's been five times in two weeks. I pray your team can find another way to manage the ascites.
I wonder if you will be written up in a medical journal! You have defied all odds and outlived all predictions. Medical teams may be able to help so many women and men to live longer, more comfortable lives and have gentler deaths from the knowledge of your medical journey.
However, you are here right now, and we love you, and we're still not ready to release you. You have taught me so much. I was able to care for my neighbor much better with your insights.
Here is Jarred the pianist and Jason the conductor after last night's concert. There was much beauty and praise sent to the Heavens and to you last night.
Thinking of you, Stephanie, and praying for your comfort. Much love, Madelyn
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Stephanie the flower comes from my back garden. Zillsnot4me is on holiday in Ireland and we met up today and were talking of you and your incredible love and grace. Love from Ireland Susanna
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thinking of you always and sending love your way from Georgia
One of your many faithful listeners,
Mary Anne
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Stephanie, I'm sure you know that you can sign off of hospice, have another longer or larger Fr. Size placed over a guide wire and then asked to be placed right back on Hospice. You have to drain to remain comfortable correct?
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Sending love and light to you dear Stephanie.
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Very long, this ramble just swept me away. Please take what you like and leave the rest.
Hi Beatmon, thank you for your respectful and relevant medical advice! I asked my hospice nurse about regular tPA flushes, but she explained that's for a different type of drain line/catheter. Mine is for ascites from the belly. While the fluid is blood tinged and often has tissue, it's still transparent (TMI!).
She has set up daily appointments for my drain line to be flushed before draining...this requires a nurse for the sterile procedure. Hospice covers daily visits, but I'm chaffing a bit at my shorter tether. Remind myself that my friend who recently died couldn't even do her own ascites draining, due to medical rules where she lived. I can be grateful that I've had nearly 11 months as my own free agent!
Am still trying to negotiate my way around my belly, ascites, tumor and growing liver (I can see and feel it change daily - totally all Alien like. (agitating video - watch at own peril - https: //www.youtube.com/watch?v=AdBu6VAESeI )
Beatmon, you're right, my hospice doctor is foot dragging on what next, if daily flushes fail. Oh well! I've encountered larger obstacles than his reluctance. Am just a bit worn down and don't feel like wearing him down. Here's a calming video:
Feelingfeline, went to the Insomniacs thread to see the photo you and Zills. Such heart-lifting happiness to put faces to your names and to see you both looking so happy. Thank you for that photo and the flower.
Mominator, I listened to the song you mentioned and appreciate so much that you carried me in your breath at the concert. Thank you!
We all breathe the same air, separated though we are by continents and seas. I love those stardust meditations where we realize we all emerged from the same source and will return to source.
This is an excerpt of something I shared at Rosevalley's topic:
I recently read of the difference between the ancient Greek words zoe and bios. While both mean life, zoe is the infinite and universal life. Bios is the finite and individual life. Zoe is Life. Bios is life expressed in time and space, our individual lives.*
A lifetime of being alive gives us the perspective that our individual lives matter most. This is reinforced when others rely on us - as your family certainly rely on you and my friends and family rely on me.
Yet, I take comfort in those cyclical expressions of Zoe - the greater life force.
To return to that strengthens me.
We are both Zoe and bios - greater and manifest beings.
* "In reality, the difference between Biological life and Spiritual life is so important that I am going to give them two distinct names.
"The Biological sort which come to us through Nature, and which (like everything else in Nature) is always tending to run down and decay so that it can only be kept up by incessant subsidies from Nature in the form of air, water, food, etc. is Bios.
"The Spiritual life which is in God from all eternity, and which made the whole natural universe is Zoe.
"Bios has, to be sure, a certain shadowy or symbolic resemblance to Zoe: but only the sort of resemblance there is between a photo and a place, or statue and a man.
"A man who changed from having Bios to having Zoe would have gone through as big a change as a statue which changed from being a carved stone to being a real man."
Mere Christianity by C.S. Lewis (p. 159)
At 3 AM this morning, I stood before the already waning full moon and felt full belonging and acceptance. In the scale of eternity, all is soon. At my human scale, this dying process seems to unfold forever.
Still grateful for the unfolding and the ability to be present for it.
This is a bit of a ramble. If it were a garden walk, I'd be catching first one beloved plant, then a scene, then a full landscape, then another plant.
I've been to ill to visit nearby Quarryhill Botanical Garden this year, but am grateful for the many hours there, now I can live there in eternity...memory.
feeling connected, Stephanie
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Hugs Stephanie- your writing and sharing is so beautiful. I hope they get the catheter unplugged and flushed. I love your description of "If I were a garden walk." Reminds me of my kids and how being short to the ground as things came into view they would stop admire and suck in whatever the wonder/plant/insect etc.. was that they saw that moment - utterly grounded and present! The world is a lovely place when you are filled with wonder and pay attention. How you can still write so well and be present for all humbles me. Thank you. Blessings today.
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Stephanie, not to argue with your Hospice Nurse, but we successfully cleared peritoneal dialysis catheters with installations and dwell of the drug many, many times. They are not bloody either, but fibrin. While I am at chemo today, I'll try to look for any published facts. There is of course an increased expense. A couple of dwells usually did the trick and Cather flowed better.
My friends brought plants for my back porch and I am really enjoying them. It is sooo hot here they require almost constant watering but the big blossoms are worth it.
Brenda E
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(((Beatmon)))
Thank you!
Hospice nurses will come daily to flush my drain line with saline, but my assigned nurse is away for a long weekend, so I'll bring this up with her next week.
Will also talk with the hospice doctor. I really want a backup plan for if/when the line fails to flush or drain. His attitude thus far is, "we'll see." Interesting, because he became my palliative care doctor in early 2011 and we've done some great medical problem solving and problem prevention together. He hasn't been a procrastinator, so I wonder what we're waiting to see.
Beatmon, I agree with you that tPA makes sense at least once in a while. The fluid is still transparent, but it's deep red with blood tinge.
Yes, any references in medical literature most appreciated! I tried searches on PubMed and Google Scholar, but most articles & studies are on ascites with cirrhosis not MBC.
Thanks again!
Healing love and light for all, Stephanie
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Thinking of you. Here is a little sweet humor:
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