Light from around the world for LongTermSurvivor/Stephanie
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Stephanie, I love reading your posts and am enjoying so much the photos that everybody is posting.
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The Fall is brings so many beautiful sunsets. Here is one for you Stephanie. Sending warm hugs.
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Gma Foley,
I'm from the Golden Rollin' Hills of California
but I sure love some Oregon Mountains too.
Magical musical pickings and singings to share this morning!
Thank you everyone for your continued loving support and beautiful stories and images of what YOU love. Together, we build this sacred space ...with light from around the world for all!
loving kindness radiating and enveloping,
Stephanie who's still breathing only room O2
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Dear Louis,
Good to meet you.
Thank you for introducing me to this Hafiz poem, I don't remember it and am glad to meet another poem friend who speaks to my soul.
It reminds me of the following meditation by Kabir. In 1978, I traveled the USA with a ragtag band of Sufi, Buddhist, feminist hippies and Kabir's poetry was our gospel text.
Hope you enjoy this friend!
Only connect, Stephanie
The Time Before Before Death
by Kabir (version by Robert Bly)
Friend, hope for the Guest while you are alive.
Jump into experience while you are alive!
Think . . . and think . . . while you are alive.
What you call "salvation" belongs to the time
before death.
If you don't break your ropes while you're alive,
do you think
ghosts will do it after?
The idea that the should will rejoin the ecstatic
just because the body is rotten—
that is all fantasy.
What is found now is found then.
If you find nothing now,
you will simply end up with an apartment in the
City of the Death.
If you make love with the divine now, in the next
life you will have the face of satisfied desire
So plunge into the truth, find out who the Teacher is,
Believe in the Great Sound!
Kabir says this: When the Guest is being searched for
it is the intensity of the longing for the Guest that
does all the work.
Look at me, and you will see a slave of that intensity.0 -
Yes, that is beautiful, Stephanie.
Is the Guest really searched for, or is it the Guest that grants the longing to search?
I decided to look up some other Hafiz and Kabir poems, and ran across the following, which in fact follows Kabir's poem above quite nicely.
Keep longing,
Louis
This longing,
this ache,
this pulsing of
The deepest part
of who you are
is the reason
why you're here.
Do not confuse it
with desire.
Desire is wanting
what you don't have.
Longing is wanting
what you do.
- Mitch Ditkoff
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Dear Louis,
To answer a poem with a book –
Mark Nepo's Inside The Miracle: Enduring Suffering, Approaching Wholeness is a beautiful meditation in poetry and prose/essay that explores the effect of his cancer experience 37 years before the book's publication. It's a truly lovely work, born of suffering, but shot through with grace and transformation.
If you resonate with Hafiz, Kabir, Rumi and other mystics, you'll gain insights and meditation-worthy wonderings from being with this book.
To the longing and the mystery!
Healing regards all, Stephanie
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Scotland, on mainland, on the way to the Isle of Skye. I felt the divine strongly here, a few years ago, in a way I hadn't since age 13. But then, I let it be interrupted. Stephanie, your words and wisdom and sharing with us have helped me to consciously seek the divine in every day and I hope almost every moment.
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Stephanie,
I LOVE AMAZON.
Mark Nepo's book is ordered and on the way.
I am currently reading a wonderful book by Gregory Boyle, a Jesuit, who founded Homeboy Industries in Los Angeles.
It is titled, Tatoos on the Heart, and is filled with stories of incredible transformations of former gang members whose lives are turned around through the life changing power of love and compassion.
It is at times hilarious and at other times heartbreaking. I would highly recommend it to anyone.
Here's to each of us giving and receiving unconditional love and compassion always,
Louis
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What beautiful photos. This site is so soothing and full of love- joining the circle of caring and love! Hope you are breathing well and no pain Stephanie.
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Dear friends,
Thank you so much for your dear posts!
You bring balm to body, soul and spirit.
I wrote the following at the Ibrance topic, but want to share it with the wider bco community, because any of us may be affected with medical trauma at any age or stage in the cancer mis-adventure.
Re. PTSD - many years ago, I coined the term MMTSD - medical mid-traumatic stress disorder - for all of us who must keep getting back on the medical horse that threw us, then stamped up into the ground. But then it's time to deal with a new diagnosis, a complication, symptom, unwanted treatment effect or change, scanxiety or heading off to the office for another session of getting ground down again.
If we don't actively address and deal with the effects of MMTSD, we can end up the victims of poor treatment decisions. Denial works well in some cases, but probably not so much when avoiding necessary medical care. (later, or pursuing aggressive treatment at the end-of-life because of fear or lack of informed consent/understanding).
And going into and through it resistant and terrified isn't probably the "spoonful of sugar that helps the medicine go down."
I so wish that MMSTD were actively addressed in all survivorship and oncology programs. Imagine - addressing and easing trauma before it compounds the damage of ongoing medical treatment for what becomes will become a lifelong medical condition.
Imagine!
We need to find healing balm not only within ourselves, in therapy rooms and in-person support groups, but also through online communities like bco. MMSTD isn't a personal failing, but an occupational hazard of our diagnosis.
I would love to hear more conversation on the topic...as we tend to separate and congregate by diagnosis, rather than draw together.
While I love and respect the intention and privacy of bco's MBC forum and the Dying and Death topic there, I'm grateful we can gather here in a more open space to explore topics of mutual concern.
I will add, that facing death and undergoing the dying process have their own associated traumas I didn't fully respect until living here for many moons. I'm still wished "pain-free days" by the kindest and most well meaning supporters, but physical pain partially managed by meds is dwarfed by all the other aspects of slow decline - weakness, fatigue, sensitivity, sore, dry mouth, nausea, ascites, malnutrition, dehydration, weight loss and a dozen other cancer-caused ailments.
I can't even imagine trying to mix in aggressive treatment like chemotherapy, frequent 9-1-1 calls, ER visits, ICU stays, life support, clinical trials and desperate hunts for cures (conventional or alternative).
I am grateful I'm taking the route out with home hospice care, just want to note, there's more to dying than a short and peaceful decline...at least for me.
On the other hand, many miracles occur each day and I'm so grateful for my ability to participate and contribute to the greater good.
all love all the time, Stephanie
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I wish MMSTD would be actively addressed for those diagnosed with any serious disease or condition. Today, the BIL of one of my good friends is undergoing open heart surgery. He was diagnosed with diabetes many years ago and did the whole denial thing; not monitoring his diet, exercise etc.......things that could have potentially slowed down or perhaps stopped the health problems he is now experiencing (including a kidney transplant and a heart attack).
It is a touchy subject, if you bring up lifestyle changes or tell someone something they don't want to hear (I have pretty much quit going on the 'I don't want to do chemo' threads because if you point out, for instance, the someone with many positive nodes really should do chemo, you get accused of being a "chemo lover"... among other things) and you can be accused of 'blaming the victim', as in the case of my friend's BIL, if you point out they aren't helping themselves with certain behaviors. Of course, I am not going to make any comment at all (nor should I) on what kinds of treatments a Stage IV person should be pursuing. I feel bad about the division of the forums too, Stephanie. There are some topics, such as death and dying, where I might have something helpful to contribute but, again, the warnings not to say anything on the top of the page are pretty dire, and some stage IV members feel very, very strongly about it.
So, if it would be standard of care to have a trained health professional address MMSTD as part of a treatment plan; that would be a win/win situation for the patient, the family, the friends, and really, the medical community as well.
That is my morning ramble on this topic.......
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One of my favorites with my new camera. Watching wildlife on our mountain calms me as the sunrises and sunsets I see.
Edited: This is a baby hummingbird that sits over the birdfeeder outside my sunroom office window. If the feeder goes empty I hear this little peep twit peep twit... from him saying please feed me.
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My experience with PTSD - like symptoms are one of the main reasons I keep coming back to BCO. I was dropped through the crack after the discovery of my IDC after my mastectomy. No nurse navigator, no social worker, no handouts, no anxiety meds, nothing but oh BTW we found an IDC, good thing you pushed for the BMX. I spiraled into a dark well of depression.
BC has followed me since my mom died of it three days after my fifth birthday. In the sixties, in my family anyway, death occurred, you stuffed it and all your emotional baggage in the cupboard, along with any memories, pictures, contact with your maternal grandparents, and you just moved on. Then as a young woman you go through decades of BC screening, hoping against hope that it won't happen to you. You even go to the extreme of having your breasts cut off to outrun the beast. Then the call comes in.
I've become pretty good at recognizing PTSD in ladies who reach out here. The big thing is to let them know they are not alone. I see it at every age and stage. Many have lives filled with past traumas, and the dx is the straw that breaks the camel's back. Often times I see it after active treatment is over, when instead of recovering our sisters are falling into a dark pit and don't know why. Many think, as I did, that it is because of the evil white pill they are being forced to take.
Help for me came via my PCP and my church's Stephen Ministry program. An incredible woman was assigned to be my Stephen Minister. In real life she was a cancer social worker. That one hour a week I spent with her was the only safe place where I could pour out my fears and begin to heal.
I vowed to pay it forward. That is why I keep coming back. And that my friends is MY rant for the day. Love you all.
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Oh Stephanie - this one is just too good to pass up. You are my 3000th post. Thank you for the 3000+ ways you bring light to my life and others!
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My neighbour's stripy roses
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Feeling Feline - and what was the bird you posted?
Everyone, tell me about your views, your bird friends, your everyday life. It's normal for you, but exotically different for me. I've not traveled further from home than 20 miles for many, many moons.
And I so appreciate our ability to share experiences and perspectives on PTSD or MMTSD or whatever you call it!
This morning I remembered again the final words of instruction from my PTSD Somatic Experiencing therapist, always move toward what feels better, trust your body's inner knowing. Of course, we'd trained for nearly 2 years to know, feel and trust.
btw, Peter Levine is brother to my acupuncturist of 30 years, Robert Levine. I've read his books since they were photocopied articles and applied many of his techniques for pain, stress and living fully.
Sending much love, light and gratitude, Stephanie
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the only comment I would like to make is I believe people have no idea what they would or would not do until they themselves are experiencing the situation them self. I strongly feel stage 4 forums are for stage 4 only. Maybe a new thread outside stage 4 for all stages for support and recommendations could be explored?
Mary Anne
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for Stephanie, from last March, our driveway after an icy storm showing my husbands footprints; he went up to the top to check how icy the road was.
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Here's a picture of my friend and I taking her dog and my grand-puppy for a walk on a lovely fall day.
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Thank you, Blinkie!
I've never lived where it snows, have never driven in snow nor have I ever been in a town or city where there's snow unless you count a few road trips on highways to California's Sierra Nevada mountains for snow trips.
It's truly a winter wonderland I've not experienced outside of seeing and hearing others' experiences.
I so appreciate learning, especially about something as vitally important as winter archetypes - ice, snow, cold, snow flakes, frosts & freezes!
Thank you, Stephanie
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HI Mary Ann,
I'm surprised and heartened to see other Stage IV/MBC members posting to other topics like Pinktober, Femara and living without reconstruction. There was some conversation recently about whether we'd be welcome to post to newly diagnosed members...fascinating conversation with no consensus among participants.
Sending warmest healing wishes, Stephanie
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hi Stephanie. I am probably pretty sensitive to recommendations. Outside bco I hear everything from try alleve for pain to I know it is difficult a friend just had a surgical procedure for cataracts. You get a lot of recommendations from people that do not have all the facts. I wish I had remained silent about the stage 4 diagnosis. I spent 5 glorious months as stage 2 with a positive lymph node b4 it was discovered I was stage 4 de novo. So with that positive node chemo was not recommended even with a second opinion. My onc score I believe was 5. Then of course things changed when I became stage 4. So you cannot quickly say chemofor positive node. You are very different from most people extending your arms to everyone even thru your own difficult times. I on the other hand would find that difficult. Hard enough to struggle with my own issues. That is one of many reasons I admire you so much. Mary anne
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Stephanie, in the previous picture I posted, every bit of dried grass is covered with ice. It's so beautiful when that happens - makes the world into a glass covered fairyland. (Also causes tree branches to break from the weight of the ice.)
Below is a photo from March taken after a very wet snowfall. The snow sticks to everything, just like ice would, but it creates a different image. Still magical. This view is looking north from our house; the icy picture was looking west.
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