Light from around the world for LongTermSurvivor/Stephanie
Comments
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I've been away from the boards for a bit. Sending love, good thoughts and gentle hugs to you, Stephanie.
This quote reminded me of you.
A simple thank you seems so inappropriate. I hope to do this with as much grace as you someday.
Love and kindness to you always.
Beppy
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Thank you for sharing your grace. I, too, hope to approach death with your calm, and your continued generosity.
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I went to Minto park today and spread cups of seeds and stalks of foxglove flowers in the dappled sunlight forested areas near the river. In a couple of years there should be an abundance of elegant foxglove for the bees and birds. Knowing you would approve of my efforts. Wishing you peace and love.
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Dear bco friends,
Thanks for continuing to shine your light for me to see!
We are guides for one another.
I continue to slowly wizen and wilt.
This morning I tried to drain ascites from my indwelling drain (had it since mid-August 2015). In spite of an average daily output of 1 liter, nothing came out! I couldn't see my belly button and I felt full, so I tried a second drain bag - still nothing. It's not an emergency the first day, but would be supremely uncomfortable by the next.
Fortunately, my hospice nurse was working today and came right out.
Third time was a charm and we removed a liter and 1.25 inches from around my waist.
Some of the medical options should the drain fail are appalling, so I wondered aloud how long it would take me to die should I choose not to replace it - only a couple of weeks and they've got ways to alleviate many symptoms.
The most annoying and untreatable symptom is cotton mouth - xerostomia - with aching, painful, dry and burning sensations that awaken me throughout the night and haunt me through the day. It's been a long time since I've slept more than 2.5 hours at a stretch - quite a feat as I still sleep at least 12 of 24 hours.
All and all, I'm joyous and have ease of well-being. I've done enough and I'm grateful for all I can still contribute.
My last anointing on Saturday was amazing - suffusing my home and heart with love and light.
Shining for you, my friends, Stephanie
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Today was a drain day for me and taking a liter of fluid off a great relief, so I am ever thankful you were able to get the fluid off. It is most uncomfortable to be full. On drain days it is hard to eat from the pressure. I am sure it is the same for you. Oh well.. we both know malignant ascites is endstage. Stephanie I feel for you. It must be so hard to wither and wilt like a flower. Precious and extraordinary... then fading. I am sorry your mouth is dry and all your fluid goes to your gut. Wonderful you were anointed and loved, ready to fly. We walked through a wildlife sanctuary and I have pictures on DH's phone. I will load them up tomorrow. Wildflowers for you.
Sending you love and light from Oregon
rosevalley
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Sending warm wishes and peaceful light to you from Minnesota. You are a special gift, Stephanie, and have touched so many. Peace and love to you.
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Dearest Stephanie,
I am hoping your drain works well for as long as it is wished to do so, and that your mouth is soothed and that your entire being is enveloped in comfort.
Each night before bed I say gentle words for you, so you are truly in my thoughts night and day.
With gratitude for having the privilege of reading your words and being inspired by your incredible grace and insight.
With love always.
- Anne
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Stephanie,
I do not post much but I sign in several times a day specifically looking for your posts. I have learned so much from you and can only hope your grace has rubbed off on me a little so I can pull from it in my own time of need. All I can say is .......what an incredible life. You have done so much for your fellow stage 4 sisters and for that I say thank you from the bottom of my heart.
With gratitude, Mary Anne
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As always, I am so touched and grateful for the kindness and consideration shown me by you!
I've been posting at bco for less than 7 months and already feel close with many of you, connected to your lives, stories and hearts....and am grateful that you feel close with me too.
Thought I'd report back on my blocked drain line for the ascites in my belly.
Complete blockage happened again today, so after monthly visit with oncologist (I broke into tears when he told me he'd visit me at home - of course! This month marks our 24th anniversary!), I went directly to the hospital where in less than 2 hours, the doctor was able to flush the line with the clot busting TPA.
My hospice nurse and doctor jumped through ever-shrinking hoops to get me into the hospital today!
Waited 4 hours after the injection of TPA and just found out that it worked!
I was able to drain a liter and am so, so, so grateful and relieved.
Rosevalley, I know you know. And I only need wait 12 hours before I can drain another liter.
Thank you for listening, Stephanie
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I am in tears with love and gratitude and amazement at your beautiful spirit, Stephanie. I feel that you have made my life (and eventual death) larger. I treasure your posts. Thank you.
ETA: I know I don't post often, but I have been reading for some time.
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Your sharing the nitty gritty details of living with a drain to control malignant ascites for 11 months humbles me. There are not many folks who have these drains for almost a year and live a full life with them relieving the pressure and misery of fluid in the belly. Folks just suffer in silence and do not share these details of their cancer journey and I feel that's a shame. We are not the only ones to have this. My first oncologist never mentioned the pleurx drain as an option and the second oncologist I have offered it up as a solution. Here it is 11 months later and nothing in this last year has brought me more relief daily from cancer's effect then removing gallons of fluid. I know I speak for Stephanie and understood her tears of joy when the TPA worked and the clogged catheter drained. Relief from fluid!! Here you have taught me something again... if mine clogs I know what might be done. Your oncologist sounds amazing and your hospice team right there for you. What a blessing to be supported and cared for. I am so glad you are comfortable again. I / we all send you prayers of love and support on your journey.
We went to Finley National Wildlife Refuge in Corvallis, Oregon. I took some pictures of the wildflowers and of the preserved old pioneer homestead from 1855. It is a gorgeous building surrounded by old gnarly apple trees and meadows. The family raised 7 children there. We saw quails, a Downey Woodpecker and butterflies and were bathed in profound silence. It was gorgeous and sacred; hope you enjoy it. love rosevalley
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I'm so glad you were able to get some relief! Now that they know what caused the blockage, I hope they will be able to prevent it from happening again.
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The sun was even more beautiful during tonight's rehearsal of Ocean Grove Choir Festival "A Vision of Heaven"
I took this picture with my phone while the choir director was working with the basses and tenors.
Sending light and love, Madelyn
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Here is the interesting sky tonight.
I am so glad that you have such a wonderful team working with you. They are certainly shining lights of their own!
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Hi Stephanie. I am not walking or breathing very well lately, so getting around is the pits. I challenged myself to make it to the beach this weekend, which makes my current view so much more enjoyable.
Sitting on the east coast, thinking of you and wishing you peace
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Dear Stephanie, you are such a graceful teacher to so many of us "younger sisters" here. I wanted to share a picture of a tiny bear that walked with me a while last night, totally unafraid. May light and beauty surround you always. 0 -
Stephanie, I wanted to share some of the awesomeness of the choir festival with you. You already got to see the sun shining on us during the rehearsals.
Now come to the festival, which was a celebration of "A Vision of Heaven." Everyone and everything was filled with light, hope, and beauty.
The entire stage is filled with the 107 tenors and 108 basses, the 9 conductors, guest speakers, and the instrumentalists. The 177 sopranos are in the top and bottom of the first section on the left, similarly the 198 altos on the left. We were told 613 singers total (don't know why the numbers don't add up).
We sang 16 pieces total. We performed the premiere of "I Heard the Heavens Sing" which was written for us and for this festival, and was conducted by the composer. Another three of the pieces were also very new pieces (hot off the presses, only performed once or twice so far), and two of those were also conducted by the composers.
Sending light and love; songs and prayers to you, Madelyn
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Let me get you closer to the action
This lady, Joan, adopted me during the first rehearsal, and saved me a seat every rehearsal since. Here we are waiting for dress rehearsal to begin.
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Stephanie you were one of the first one to respond to me when I first posted and I want to thank you. The way you've handled what life has been dealt to you has been inspiring to all of us. Your beautiful spirit has shined through it all. I truly wish that we would have met sooner or could have spent some time together. Thinking of you and sending prayers that God is with you and helping you stay strong.
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Thank you for the light, my friends.
I'm definitely in the glow and in the flow.
What an interesting journey is unfolding and I need do less and less now - just enjoy the ride.
And so grateful I do and am.
Hospice nurse due momentarily and I must pull things together for the visit...brush my teeth, refresh my water glass, rest and relax before the exam.
Am reflecting back the loving light to each of you - glow on friends, Stephanie
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Thinking of you tonight, Stephanie.
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Thank you, everyone.
My morning started with a bummer.
My drain line is clogged again - just days after last week's clot busting procedure at the hospital.
Have not fully recovered from that experience and thinking about going to hospital to have it done again is nearly overwhelming.
I've some hope that my hospice nurse can flush the line at home. The day is still unfolding.
But, how soon before the flush fails?
The suggested option is to have the drain replaced - easy to say, expensive to do ($18,000) and physically taxing.
Is it worth it, given the failing nature of my failing body?
My liver extends below my waistline and into the left half of my torso. My right lung is compressed, as is my stomach. With the ascites fluid, I look about 3 months pregnant this morning and likely to gain 2# daily on my 5'6", 100# frame. My bones protrude in beauty.
My hope is to be physically comfortable.
Does that mean more drugs and waiting out this final series of events?
Or do I plan for a drain replacement procedure?
How do I even begin to make these decisions? And am I really in control of decisions or outcome?
Oddly, I've not lost my mind, my sense of humor or my perspective. Am just in the thick of the advanced breast cancer experience now and noticing how blessed I am to bring my full self to this.
And I'm so grateful for my carers - my hospice team and circle of care family and friends. The folks at the hospital are even known and supportive of me too. So, I'm living in a bubble of light and love.
Thanks for listening!
Stephanie
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Stephanie, sorry to hear your morning started out this way. I pray you find some answers and are able to deal with the clogged drain without having to go back to the hospital. You have an amazing spirit, and may you continue to live in a bubble of light and love. You share so much with us here, I for one will be forever grateful for your presence and all you offer. Sending healing hugs, Annie
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Stephanie may your nurse be able to flush your line! I tried to drain this morning too and only got a few bubbles. I panicked remembering how yours clogged. Then I got another bottle and it drained 1000cc right quick. So it was a defective suction in the bottle. Thank goodness. We both know how much better we feel to drain off the fluid. It's heaven. I wish you peace and comfort. This is so hard. Take care my friend. I will be thinking of you and hoping your nurse gets it to work. Maybe they could try a bottle with suction to remove the clog? I don't know if that's an option. Lovingkindness to you and gentle (((hugs))).
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Hugs being sent your way.
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Stephanie, I am always thinking of you and you will continue to be in my prayers. It is so amazing how you can feel a connection with someone solely through their written words. I feel that connection with you similar to a family member.
Loving thoughts,
Mary Anne
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Hospice nurse came to my home with special kit for clearing the line and it worked.
Incredibly grateful for the relief and to avoid a hospital trip.
So weird to swell so much in one day, but glad to know that I have more options now.
Relieved! Stephanie
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Prayers were answered!!! I was worried about you all day. So happy to hear that the line is cleared and you are draining again. Wishing you peaceful days and lots of love. Rosevalley
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The RN should be able to pack the drain with TPA...urokinase...and leave it in. Then the next time you drain, it would flow out with the drainage. They could teach you to pack it after each drain as you clamp off. We did it 3 times a week for some dialysis catheters. Since you have hospice, why couldn't it happen?
Brenda E
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Stephanie, so happy to hear that your hospice nurse was able to help you! I can feel your relief and glad you were able to avoid going to the hospital.
Hoping today is a good day for you. (((Hugs)))
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