A place to talk death and dying issues
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Many, many years ago I studied the Russian language and became fascinated by this seemingly simple poem.
"The Sail" by Lermontov
A far sail shimmers, white and lonely,
Through the blue haze above the foam.
What does it seek in foreign lands?
What does it leave behind at home?The billows swell, the chill wind whistles.
The rigging swings, the tall mast creaks.
Alas, it is not joy it flees from,
Nor is it happiness it seeks.Below, the seas like blue light flowing,
Above, the sun's gold streams increase.
And yet it's the storm the rebel asks for,
Because there in the tempest, it will find peace.0 -
Oh my goodness, Bestbird. I memorized that poem while studying Russian in college. I remember writing a paper in Russian about how we find our true strength when storms invade our lives. Oh what a joy to reread that poem tonight.
I am sitting tonight with a favorite book of short stories by Barry Lopez. The short story "Gone Back into the Earth" is about a trip to the inner gorge of the Grand Canyon and he ends the story with the following...
"I do not know, really, how we will survive without places like the Inner Gorge of the Grand Canyon to visit. Once in a lifetime, even, is enough. To feel the stripping down, an ebb of the press of conventional time, a radical change of proportion, an unspoken respect for others that elicits keen emotional pleasure, a quick, intimate pounding of the heart. ...
The living of life, any life, involves great and private pain, much of which we share with no one. In such places as the Inner Gorge the pain trails away from us. It is not so quiet there or so removed that you can hear yourself think, that you would even wish to, that comes later. You can hear your heart beat. That comes first."
Wishing much loving kindness to all on this thread...
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I shared this poem at my dad's prayer service, and would love if it would be included in mine:
Death is Only an Horizon by Rossiter Raymond.
O God, who holdest all souls in life; and callest them unto thee as seemeth best: we give them back, dear God, to thee who gavest them to us. But as thou didst not lose them in the giving, so we do not lose them by their return. For not as the world giveth, givest thou, O Lord of souls: that which thou givest thou takest not away: for life is eternal, and love is immortal, and death is only the horizon, and the horizon is nothing save the limit of our sight.
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Ooo, poetry. Yum!
Here's mine on the garden theme:
life is a garden,
not a road
we enter and exit
through the same gate
wandering,
where we go matters less
than what we notice
~ Bokonon ~
(The Lost Book)
xxx
Krista Tippet recently interviewed palliative care physician BJ Miller on disability, design, dying and death in her On Being radio show. Links to that and his TED Talk and TELOS conversation follow these excerpts from the show:
Let death be what takes us, not lack of imagination.
Krista Tippett with BJ Miller palliative care physician and executive director of the Zen Hospice Project in San Francisco and assistant clinical professor of medicine at University of California San Francisco.
Reframing Our Relationship to That We Don't Control
MS. KRISTA TIPPETT, HOST: "Let death be what takes us," Dr. B.J. Miller has written, "not a lack of imagination." As a palliative care physician, he brings a design sensibility to the matter of living until we die. And he's largely redesigned his own physical presence after an accident at college left him without both of his legs and part of one arm. B.J. Miller's wisdom extends to how we can all reframe our relationship to our imperfect bodies and all that we don't control.
DR. BRUCE (B.J.) MILLER: There's a big difference between things that happen to you, that are forces larger than you. I can yield to Mother Nature. I can yield to 11,000 volts. That's a very different prospect than is shutting down your imagination or rolling over altogether. So there's a challenge to our sense of proportionality in all this, and I've loved that theme. That word "proportionality" comes up for me a lot, trying to right-size myself.
xxx
Dying is different from death… most of us are afraid of dying because it implies suffering. And when you get down to it, that's what most people are worried about.
MS. TIPPETT: The dying rather than the death of the being.
DR. MILLER: Yeah. So there is a lot I have learned that will help me suffer less, that can help me help others suffer less in that dying process. But I do not pretend to know or understand death per se. And part of what I do, the reverence that you point to is, again, back to this mystery, this thing that I don't understand that's much larger than myself, and that — what happens after I die? I don't know. And, boy, isn't that interesting?
--by Krista Tippett, syndicated from onbeing.org, Apr 04, 2016
BJ Miller: What really matters at the end of life/ TED talk video recording https://www.ted.com/talks/bj_miller_what_really_matters_at_the_end_of_life?language=en
BJ Miller: audio recording/ The New School at Commonweal – TELOS – end of life series
http://tns.commonweal.org/event-series/end-of-life-conversations/
The present moon is smiling as she leads the sun into morning.
All love, Stephanie
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Wow, could not be more joyful to read the poems selected by my fellow crew members on this sail to the perfect storm! Given all, what a metaphysic vision, what a intense emotion inspired by the desire for beauty!
Maine, my dear New England neighbor, I guess my subconsciously hidden point is that the "bridge" we are wondering about most likely will show itself to us in time naturally and peacefully. I guess probably this is why the dread of death traumatized me when I was seven, but did not do the same when my death in fact became certain in terms of time and manner. I guess we will all eventually and most likely with grace come to term. I guess I am realizing that the watcher of death probably is in a more anxious and sorrowful position than the doer of death. That is a relief.
Bestbird, I did not expect to re-read Lermontov's "The Sail" 50 years later in English in America in your post on this cancer site! I am joyfully psyched! I copied this poem's translation in another language (my native language) in my small notebook when I was in primary school. At that time I considered this poem to be the most romantic one I had ever read. I desperately wished to live a life like that. I kept this notion throughout my youth. I did not fully realize the symbolic meaning of the storm until now. Before, I thought that was the intense yeaning for adventures, battles, revolutions... Now, I know, it is also the death of the sail... What a poem!
Oriole, me too, used to study Russian in college. For a long time, I thought my Russian was better than my English (I am not a native English speaker) until I enrolled in a graduate school here in this country and was tested for a teaching assistantship in the Russian Department. I then realized I almost totally forgotten my Russian ( I used to be able to read Tolstoy in Russian)! That was only 8 years after I graduated from college. Naturally I did not get the TAship. Two years ago, I met a couple of guys from Belorussia in Germany when I was travelling (before knowing my MBC diagnosis), I managed to tell them in my poor Russian that I used to study Russian in college, but now I can't speak Russian anymore because I already forgotten all of it. They laughed. I know, because I did speak in Russian about it. The truth is, sadly that was all I could do in Russian.
Rosevalley, your DD1 is fighting on another path for living. She has my profound respect and admiration.
Stepanie, beautiful poem. Thank you for introducing. I hope you feel stronger and comfortable today.
It is snowing hard outside.
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Ruthbru, I love that poem! I learned it as a song by the gay cappella group, the Flirtations - takes me back to the days when AIDS was nearly instantly fatal and I felt my community dying away around me - a hard winter to be sure.
Maine - we are all dying, but through recognizing our mortality, life achieves a certain glow, a shimmer showing us how tender and fragile we are. It's hard to bear at times. So beautiful, so mortal, so transient. I'm glad you're here and to meet you too. It's important to understand that this topic isn't just for we "designated diers", but can be of use to others.
Xavo, I'm really enjoying getting to know you. We share so many of the same interests! Thank you for bringing more of yourself to the fore.
And Bestbird, thank you for that poem. I've lived my life near the sea and relate so much better to ocean metaphors than to the cold and snowy winter = death metaphors. The far horizon is indeed unknowable from the shore were we watch and wait and wonder.
I'm up early again this morning, this time with both nausea (swaying and hiccuping, but not vomiting) and foot and leg cramps. Ouch!
Now that I'm awake for a while before drain-time, I thought I'd gather my thoughts.
This afternoon I see my oncologist of 24 years after a two-month interval. Our monthly visits have continued, because he's my PCP and hospice approved our visits. But, last month he was traveling abroad, so I saw his partner who I also love very much.
There's something about walking the long road with these caregivers. Not only have they done amazing by me, but I've strengthened their faith in their calling by reflecting back their dedication, competence and generosity of spirit. While I've been far from a compliant patient, I understand that they're offering me the best tools in their too tiny tool boxes. Now, they trust my supplementing their care and suggesting nonconventional uses of conventional drugs (like the 2 years I spent on estrogen for ER+/PR+ cancer, then the spell on testosterone for cachexia).
And, because I've referred many close friends to them, friends who've since died, we have mourned together. That makes for deep bonds! I even relieve their guilt (forgive them) - that their best medicine wasn't sufficient to keep our loved ones lived.
So, today, I'm contemplating whether to stop femara.
Hospice has allowed me to stay on it, because it's palliative not curative treatment. I think it's slipped through Medicare's net of permitted hospice meds, because the generic is all of $9 monthly (I remember taking it when it was $1000 monthly).
Here's my thinking - the femara isn't producing any unwanted effects and I think it's subduing my lung and pleural mets while not doing much against the liver and belly mets (pathology has been on-again off-again for ER/PR status).
I can't think of any reason to stop the femara for its own sake. I'm not choosing between stopping an aggressive, ineffective and disabling treatment regimen and dying. It's like choosing between stopping an inoffensive, possibly effective drug and dying a little quicker.
But, here's the rub, I think I'd rather die of liver failure (which seems to be happening even with the femara) than suffocating of lung and pleural mets (already came close & hate the feeling!). Stay on the femara, Stephanie!
So, the choice to stop might be about hurrying the process along, maybe a bit, and facing a more gruesome ending. Or waiting it out with the femara and enjoying the slow motion slide through dying into death.
Friends, I think just talked myself into staying on femara and can tell this story this afternoon. Then he and I can address some of my other nagging symptoms and hear stories of his recent travels. Except for doing it one's self, what is better than a vicarious adventure with a great storyteller like my oncologist. He should have been a novelist!
This is why I believe in stories. I learn from telling and from hearing about people, places and situations I might never otherwise encounter. And my world is expanded. My capacity for empathy, compassion, acceptance and belonging grows proportionally to the stories told and taken to heart. I love others and myself more whole-heartedly and recognize intrinsic wholeness and evolving stories.
Believing in all of us and the value of our stories!
Thanks for allowing me to assemble mine this morning.
Much loving kindness for all, Stephanie
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Stephanie I hope your visit to your beloved oncologist goes well. I am sure the two of you will sort out the best option to slide down the path least obnoxious. I wish you fortitude and clarity. These are not easy decisions. At least your hospice team and care providers are surrounding you with support, here too. Take care today.
I have a head cold my DD2 gave me from college. Yay for sharing.. I can't breathe and can't hardly think either.. so I will spare you ramblings. I think of Nancy, Hope, M360, Brenda and all of you struggling on the path of treatments failing and other health issues. Special hugs to those on hospice. May we be free from suffering and be happy. Love to all.
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Big virtual hug, dear Rosevalley. May those germs become history as your immune system activates to restore health. Hope it doesn't last long and you find ways to enjoy your downtime.
Loving kindness for you and all, Stephanie
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Just got over pneumonia and now have another cold. We are booked to travel with my daughter, SIL and precious grandson in 2 weeks to Orlando. This trip was booked about a year ago before my diagnosis was upgraded to stage 4. It will be my GS's first airplane ride and 1st Disney magical experience. My over protective in denial (bless his heart) DH wants to postpone the trip. Until when.......when I am worse? My Onc has moved my I treatment dates around & says to go. I rented a scooter since I cannot walk/stand for any length of time without severe pain. I realize it will be hard but in my mind it is so worth the effort and recuperation time when we get home. Would you do it......or am I the one in denial?
When I was younger I was scared to death of death. I am 62 now and way too young to be facing death head on. Throughout this whole process I have learned to not fear death at all.....except when it comes to pain which I am confident my Onc will continue to control. I've also learned to do my best to right any guilt feelings I have had. Some were justified, some not but I do know that guilt sucks and I cannot tolerate it. Unfortunately I can't talk to my DH about my treatment philosophies and death. I plan to fight as long as I can but when I am tired I will be done. He doesn't want to hear that. It is here I feel like I can explore those feelings all the while being accepted and understood. I did not post before but thanks to Stephanie I feel I'm ready.
I wish you all a pain free serene day. I'm daydreaming of sunshine and warmth for all. Hugs
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Jarharis29- I feel for you as I have a cold too. But as you pointed out your pain will be controlled and there is no better time to enjoy the present then now! I would go and make memories. Enjoy the plane ride, the wonder, the entire experience.. and the warmth and sunshine too being from the upper Midwest. 62 is young and you need to get in there and live. I hope you have a wonderful time. Don't expect DH to come around, mine thinks I will always make it through and it's just a matter of time, the right med and luck. But we all know that death is the great certainty and it will come, so enjoy each day now. I hope your cold gets better for the trip. Hugs. Glad Stephanie showed you the courage to post!
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Hi JHarris,
When I read this on my cell phone yesterday, I said, "yes, go!"
This morning, I'm a bit more sober and say, prepare and go and take the risks.
It sounds like your husband is on the cautious end of the risk-taking scale and wants to shelter you.
As we know, this portion of our lives is all about risk and we must do what we can to reduce it, but we also must live lives that matter to us and our loved ones. Making happy memories with your family is a wonderful gift only you can give, JHarris.
My dreams brought many stories of risky adventures undertaken by those already living in life-threatening circumstances.
I've one dear friend who went on pilgrimage to Mexico City this week - while she's got off-and-on gi blockages.
My dad went to Maui with lung cancer and pneumonia, relapsed and spent his time in local clinic and lying around his warm and sunny condo room, after a harrowing ride from the wet side of the island. He was a story teller and this made a fabulous story to tell, complete with 400 hairpin turns through a huge storm.
Another close friend went on a jeep safari in Africa with untreated bone and spinal mets. Her RO was horrified that she'd sever her spinal column. While that didn't happen, she did have a stroke while there and died several months after her return home.
All would say their risk was worth taking!
I agree - we weren't built to live cotton-wrapped lives protected from all of life's bumps.
JHarris, I just bet that Disney World has resources for mobility-impaired and immune-compromised guests. As do the airlines, airports, hotels and restaurants. Also, if oxygen is a problem, there are these cute little converter units you can carry, so you needn't have a tank.
My vote is still, "yes, go!!
Embrace your courage and convince your husband that you'll be as safe as possible in a very unsafe world.
btw, so happy I helped you feel safe and supportive enough to share yourself here. And I hope this isn't too directive of a response. Whether and how to go is your choice.
warmest healing regards, Stephanie
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Dear D&D friends,
Let's see, yesterday, my oncologist and I talked about glaciers, snorkeling coral reefs, cruises, the nocturnal marsupials of the Tasmanian bush and his visit to recently cyclone-stripped Fiji where he saw his patient at home. I've followed her story for years - she came to the states as a low-paid caregiver and was uninsured when diagnosed with MBC. He'd treated her at no-cost, gave her samples of Femara, tried to get a breast surgeon to remove the large tumor from her breast at no-cost. Although failing at the latter, her bone mets melted away and her breast tumor remains.
He went with samples of Femara and large bottles of Costco Advil, but spent his time being shown around the island by her tax-driving husband.
He's such a mensch!
I told my stories of how I'm feeling, how it's going on hospice and why I'll stay on femara. He too is of the feeling that it isn't hurting and may be helping me. And he agreed, better to die of liver failure than suffocating from lung/pleural mets.
It was an altogether happy and reassuring visit with a beloved man.
I am so very blessed - in one week's time I will see a handful of treasured healthcare providers that I've known for 24, 23, 27, 17 and 30 years. And today, my hospice nurse of just 5 months time.
This is truly a miracle. My body is still scarred by medical mistreatments and neglect. But my psyche has healed from the devastating emotional wounds. Working together with others has been a healing balm for my soul-spirit.
I wish such deep healing for all, Stephanie
P.S. off to look up images of wombats, platypus, Tasmanian devils, quoll and pademelon.
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Stephanie, it sounds as though you have forged amazingly strong and wonderful relationships with your health care providers, and that your discussion with your beloved oncologist help put your mind more at ease about staying on Femara. Sending you best wishes as you look at the wombats!
Rosevalley, I hope your cold subsides (I take Airborne before and during a cold, which seems to help a bit) and that your day is peaceful!
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Stephanie- I am so glad your visit went well and you have had these relationships for decades! Good for you. I am happy you feel the direction they are on meets your needs and expectations. It's blessing to be on the same page.
My cold is a teeny bit better, but after the faslodex shots I just wanted to sleep... might have been fromgetting up at 5:50 to be in Portland by 8 am. I went to the onc today and my markers have dropped 221 points since the last draw a month ago. I still need reglan and a low residue diet to get food to go down and to eat without nausea and vomiting, but the oncologist said this was the fastest she has seen faslodex work. Especially in someone as dire sick as I was and who has failed so many chemos and has advanced disease in the gut, lung, liver and bones with malignant ascites. I am encouraged by the progress and numbers, but she wouldn't say how long she thought it might last when you have wide spread advanced disease. We discussed trying Ibrance to add before the markers creep up again, but for now we will forge ahead on this same course of faslodex alone.
I asked about antidepressants. I will try celexa. I know it's just a matter to time that my options will run out and I will be sitting at exactly were I was in January. I find that depressing. To be given this reprieve I feel I should be happy.. for myself and my family, frequently I am sad and pensive. So better living through pharmaceuticals. Anyone have stories to tell about antidepressants that helped them weather the stormy seas of treatments? Please share them. It is 75 degrees and sunny and lovely. I need to walk the dog. My border collie is always happy despite her arthritis.
Stephanie, Nancy, Hope, M360 and all others in hospice and struggling with advanced disease may this day be free from suffering and may you be peaceful and happy. lots of love rosevalley.
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lol, laugh out loud as I have learned from my niece. Stephanie, your teaching is now going in a different direction. I had to google quoll and pademelon. Never heard of either. Keeping my brain active you are!!!!!
Mary Anne
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Cute little critters and not happy being tagged and measured in the video. How come when I go to oncology appointment no one ever talks about interesting animals from Australia? It's all boring studies.
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second that rosevalley. Good for our souls and brain to have some other interesting topics. Keeps mind off more serious matters at least for a while. I hear a word I don't know and straight to google I go.
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I keep you all in my daily meditation. I have not forgotten you. I mentioned in a previous post something to the effect of sensing a shift inside and making a commitment to myself to explore it further. I've just been too unsettled. Yesterday, I tried to experience in its various manifestations the thought that suddenly came to me: My gifts are not wasted if I give them to myself. That's still percolating.
Today I have been trying to go a little deeper. For now, I'll share the deeper exploration in its most simple form:
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Longtermsurvivor: I have mets only to the lungs, recently diagnosed. I have seen you twice state that you would rather die from liver failure than "suffocated from lung/plueral mets." Is that how we with lung mets die...if feels like being suffocated? That is a horrifying what to die. Like being crucified.
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Hi Goodbye Girl,
I don't think we've met before, so I'll say hi and welcome to the D&D thread in bco's Forum 8 for those with Stage IV and MBC ONLY.
When I first joined, The Divine Mrs. M. offered a very good analogy for bco forums and threads. Forums are like towns were members congregate around shared interests (diagnoses, treatment choices, other) or just to meet one another. Threads are like neighborhoods where we feel free to share whatever is going on with us. Sometimes, I think of threads like clubs or meetings to talk about specific interests, like this D&D thread. Then there are individual threads for individuals.
Goodbye Girl, I want to apologize if my post scared you, I was writing about myself with my particular body and configuration of mets and symptoms. I've had lung mets since 1999, pleural mets since 2008 and have been very symptomatic with them (short of breath, pleural effusions, etc.) for the past four years. The possibility of suffocating is very real for me and until the liver mets came along in 2014, it looked like lung would be my ticket out. I even researched how people die of cancer and wrote reports on it for myself (I'm a geek).
Goodbye Girl, my experience is not a crystal ball for yours!
I think it is human nature to want to predict the future. In medicine, we use tests (imaging, scans, oxygen saturation rates, blood tests) and signs (measurable, often visible signs) and symptoms and treatment response and stories of others to guess our futures. But, until we actually live them, we honestly don't know how it will go for us. Living with the unknown is one of the most difficult parts of living with advanced cancer, that's why so many of us engage mind-body approaches like Mindfulness Based Stress Reduction (MBSR).
Yes, people with lung mets might suffocate to death, but something else might get them first (I'm wasting away with cachexia). Or maybe they get a pneumonia and die of sepsis. Or, maybe, a blood clot. Or maybe the whole body does a "soft landing" by all systems collapsing at once and no suffocating.
Hospice assures me that there are ways of treating my air hunger and dyspnea (shortness of breath) that include oxygen and opiods (to reduce my consciousness of symptoms and relax the lungs). I will use them if necessary.
But, Goodbye Girl, you are newly diagnosed with lung mets. I too want to believe that you are many years down the road from dying. Years better spent enjoying life than worrying about just one possible future for yourself.
Have you joined bco's Forum 8 Mets to Lung thread?
https://community.breastcancer.org/forum/8/topics/780588?page=49#post_4659863
You will find others there whose cancer still responds well to treatment and you will get support for getting treatment, including treatment for related symptoms that may trouble you at some point.
Goodbye Girl, I think/feel better in metaphor than geek medical-talk and this poem comes to mind. It seems appropriate for all of us:
The Way It Is
There's a thread you follow. It goes among
things that change. But it doesn't change.
People wonder about what you are pursuing.
You have to explain about the thread.
But it is hard for others to see.
While you hold it you can't get lost.
Tragedies happen; people get hurt
or die; and you suffer and get old.
Nothing you do can stop time's unfolding.
You don't ever let go of the thread.
By William Stafford, from The Way It Is, 1998
Sending a warm hug this morning, dear Goodbye Girl, Stephanie
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Dear sweet Brenda True,
I love that you are turning in and listening to your heart, intuition, inner guidance or whatever you call that deep self-knowing wisdom.
I too need to remind myself to direct loving kindness inward daily. And to listen to my heart's song.
Like you, I listen to the needs of the world and respond...sometimes without the strong inner base of self-kindness, self-knowing and self-compassion. But, without that base, I lose balance and over-give or become ineffective in the world.
Last year, a Zen Hospice therapist gave me a mantra that still makes me smile, "I have done enough."
While, I don't fully believe it, it's still a good meditation.
Brenda, here's a song that we can easily sing to ourselves now,
Sending a very big hug for you too, dear Brenda True, Stephanie
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Hi Rosevalley,
You wrote:
My cold is a teeny bit better, but after the faslodex shots I just wanted to sleep... might have been fromgetting up at 5:50 to be in Portland by 8 am. I went to the onc today and my markers have dropped 221 points since the last draw a month ago. I still need reglan and a low residue diet to get food to go down and to eat without nausea and vomiting, but the oncologist said this was the fastest she has seen faslodex work. Especially in someone as dire sick as I was and who has failed so many chemos and has advanced disease in the gut, lung, liver and bones with malignant ascites. I am encouraged by the progress and numbers, but she wouldn't say how long she thought it might last when you have wide spread advanced disease. We discussed trying Ibrance to add before the markers creep up again, but for now we will forge ahead on this same course of faslodex alone.
Rose valley, I too am encouraged by your progress and numbers, but especially that your appetite and ability to eat without vomiting have returned. It's impossible to know how long this reprieve will last, but I hope for a good long time for you. Time to make more happy memories with your family, to attend more celebrations, to enjoy more of life and to live loving kindness.
We are not all well, but we are well even with the illness of cancer affecting so many aspects of our lives.
Rosevalley, yesterday was bloomin' hot here in N. California. The grasses grew a foot in a day and delicate plants wilted. Will be cooler today and showers are on the way. Though recent heavy rains broke the drought, every living being, including soils, creeks, rivers and lakes are still stressed by four years of drought. Plus, our population and water demands just keep increasing. My heart feels so fragile when sentient beings suffer.
Songs and poetry are flowing like a river today, here's one I fished out for you, dear Rosevalley.
With great tenderness, Stephanie
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Thank you Stephanie for reintroducing me to this thread. I am from Wasilla, Alaska, and therefore I identify well to winter/snow metaphors and sailing. Oh how I love to see the crisp, beautiful snow cleaning away the drab, gray skies, and lightening up the yard and forest. Yes, the sail boat (that belongs to my son's grandparents) is waiting in the harbor for summer sails out of Seward, AK. Adventure is just a few months away.
If I were to identify with any labeled religion it would be Buddhism. But not because of any warrior connotation, for peace and presence in this moment of gratitude. I am grateful for a loving husband, family and community of supporters. They didn't just materialize when I was diagnosed three years ago, but have travelled 42.5 years of adventure with me. I am continually open to new friends like each of you, who contribute what you do to my life.
I wrestle with trying to have control over this dying process. When I was diagnosed, I did my Type A, dealing with the business of dying. Wills, POA, letters in progress, projects mapped out to finish. I wrestled with giving up my young nursing career, and accepting disability. Now, I have settled in to living in the moment, day to day, finding hope and love where it comes to me. I have a small poultry micro farm out back, and I enjoy my ducks, geese, and chickens. Even if my husband gets stuck with the chores when I am too sick to care for them.
I still try to pick up the control stick. I have two sons (step-son/son) who are 2016 H.S. Graduates, one going off to college this fall. My husband will start the 18 month BSN Nursing program at UAA in January. My death is not going to be "convenient" whenever it does happen. I worry when I run out of options, will my decline/death "fit" into what they have going on in their lives. I know, dumb and something I have NO control of whatsoever. My best friend grabbed hold of me & said "it's never going to be convenient for any of us to lose you Shelley!" So apparently, there is no use in worrying.
Rosevalley-I have been on 20mg Cymbalta (anti-depressant) for almost three years to help with my hormonal mood swings, and hot flashes from chemo-induced menopause, followed by ovaries/tubes being out. It helped tremendously with both, and I wouldn't go without it. I recommend it to other women who are going through pre-menopause/menopause who don't even have BC. I also tried Wellbutrin in addition, and I ended up with horrible s/e, such as cotton mouth (which is lame on top of chemo mouth sores), skin reaction (hives) and I didn't see any noticeable positives. So I went off it in a month.
God bless each and every one of you. I appreciate the encouragement and realism you all bring to this discussion board. Our path isn't all rosy and has a lot of valleys, that seem dark with clouds sometimes. I am sorry others are traveling the same path, and I feel less alone knowing someone understands what I'm going through. Peace & gratitude.
Shelley
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Akshelley, what a honey you are - thank you for sharing more of who you are and how you got here. I too was diagnosed with cancer in my 30s and while I didn't have the family responsibilities you do, I struggled with walking away from my career as a social activist and non-profit financial manager and going on disability. Yet, I could continue to work for healing, peace, love and understanding while on Social Security and have been effective in my own small way.
Shelley, one of my favorite bc writers (poet, author, naturalist), Eva Saulitits, was in Alaska and Hawaii. Before she died recently, she spoke, wrote, taught and was profiled in the Alaska media. Her blogs are extraordinary and will probably interest you because she was also young and in love with all of life. You will understand the allusions to place which I can only imagine, never having driven or lived in snowy climes. I've never even seen urban snow, pitiful I know. This is a big beautiful world we share!
Here are her blogs:
Pre-mets:
http://alaskanincancerland.blogspot.com
Post-mets (free registration required):
http://www.caringbridge.org/visit/evasaulitis/journal
And yes, just having your paperwork in order and telling your loved ones about the seriousness of your diagnosis is probably not all there is to death preparedness. I think our transient nature calls us to live more fully and wholly, because we recognize the preciousness of each moment, each encounter, each word we speak and hug we share.
Shelley, sending a warm healing hug! – Stephanie
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Eva's writings are amazing. I think you introduced me to her Stephanie! I have learned so much from everyone here. So grateful for the community. Welcome Shelley. It's hard giving up nursing and with young ones in school. I hope the new antidepressant will lift my spirits a bit.Happy to hear Cymbalta helped you. After getting a taste of gut strangulation by cancer and partial blockage it was a very rough and miserable ride. Daily puking and relentless nausea is horrible and I am glad to be past it. But now I know how I will die and it's a bit depressing. Liver failure would seem like a dream. Air hunger for pleural mets doesn't sound or look like fun.. ativan, MS and O2 can help.
Brenda I just finished the book After the Ecstasy the Laundry by Jack Kornfield. It was an amazing blend of Buddhist, Christian, Sufi, Jewish and Hindu perspectives on the spiritual path. Along the lines of "before enlightenment - chop wood carry water, after enlightenment chop wood carry water." Our precious lives carry us to enlightenment, prayerful ecstasy and then back to ordinary life powerful in it's ability to transform and serve us.. the laundry. How to maintain the dance between the spiritual and mundane. It was such a powerful book full of so much, that I feel I must read it again to capture it all. Loved the poems, stories and observations. I have a rock with the quote "listen to your heart." It used to be at the cabin.
Blessings to each of you and thank you for sharing and taking the time to post! Lovingkindness to Nancy, Hope, M360 Stephanie may your days be filled with loved ones and free from suffering. Sweet dreams.
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I have read Eva's writings! I love them, and identify with them as I love sailing, Homer, and the kindness of Alaska's people. I had posted her writing to my support page, which is to support others with the resources I find along this path. It's www.facebook.com/teamshelley
But now the links are right in front of me so I'll take this time to reread them.
I'll be keeping you in my thoughts RoseValley. I have mets to the lungs also and know air hunger, and sleep better on nighttime oxygen. Focused breathing is all I know to recommend, plus the Ativan or Diazepam. Fentanyl patches also help for pain and breathing.
Thank you each for being an example of grace through this.
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Life with dignity - very long!
Wow, here's a convergence of my worlds. Eva has been so important to me, as has Jack Kornfield's work to co-found Spirit Rock Meditation Center (SRMC) in Marin County, California. And Dying and Death have been been dance partners throughout my life - first my genetic condition, then breast cancer.
For the past 23+ years, I've attended annual or semi-annual weeklong retreats at SRMC, building and strengthening practices that sustain me during my cancer time.
Woke up thinking about those seed retreats whose benefits reveal themselves in the future.
Being the object of so much medical attention for so long, it's challenging to keep my dignity, my humanity. Many times I've felt I was being treated as a medical oddity (truly am!) or a piece of meat (certainly while anesthetized) or a lesser participant in the process (being "done to" rather than the doer of my life). To find, maintain and affirm dignity under these conditions is a huge challenge. To convince others that I'm a participant, not an object may not be "business as usual", but is fundamental to my human dignity.
Just as I've worked for years to heal my relationships with medical professionals and to overcome MMSTD (medical mid traumatic stress disorder - when you can't get off the medical roller coaster), I've also had to work with another, darker, emotion - envy and jealousy.
Although I can pass in the "world of the well", it takes a whole lot of effort that I sometimes just don't have.
My dear friend who died of cancer two years ago grieved mightily over leaving her beautiful life with loving family and friends to live in cancer land - a sorta grayed down version of life where she was a servant and often a victim of her body's limitations and medical interventions. Her dozen years with cancer and treatments (that included lots of steroids) were spent first in denial and rebellion, then in skirmishes, then in loss and finally, near permanent exile as a prisoner in the war on cancer before her body eventually died. Yet, her spirit was so strong and rose to meet every challenge thrust her way. I would say her life was healed and her death too was a healing, because some aspect of her spirit still shone, even when unconscious.
Cancer land can mean exile from people and things we love. So much loss of identity and activities that bring meaning and purpose.
Envy and jealousy have often bubbled up within me - when hearing of others' professional and academic successes; realizing that they have a better than 50-50 chance of having a healthy child; appreciating their travel adventures - vicariously; while witnessing their loving long term relationships; etc.
We've talked a lot about loving kindness at D&D and Brenda brought the related Buddhist practice in an earlier post.
What's helped me more than anything is another of the four Divine Abodes*, sympathetic joy. It's given as an antidote to the enemy of envy and jealousy.
Since an earlier meditation retreat introduced me to the practice, I engage sympathetic joy when experiencing those pangs of envy or just when feeling low, by rejoicing in the good fortune of others and wishing them even more. I know their joy adds to the joy of the world and my ability to expand beyond my personal situation enriches life, all life, theirs and mine. Also, it's an uplifting way to be with others, because compassion and loving kindness sometimes tune me into suffering more than joy. Sympathetic joy brings human dignity to me when I'm distressed by fortune - Others' good fortune or my own ill fortune.
While sympathetic joy has been great medicine for me, I don't prescribe it for others. Instead, I'm sharing this as an imagination for living in more dignity, peace, patience and understanding of the ever-changing nature of being.
May my words be helpful and healing for you. Please take what you like and leave the rest. Offered with the best intentions, Stephanie
* The four heavenly or sublime abodes (best home) - Highest Attitudes/Emotions. Near enemy is a quality that can masquerade as the original, but is not the original. Far enemy is the opposite quality.
Loving kindness, good-will (metta): Near enemy – attachment; far enemy – hatred
Compassion (karuna): Near enemy – pity; far enemy – cruelty
Sympathetic joy, appreciation (mudita), joy at the good fortune of others: Near enemy – comparison, hypocrisy, insincerity, joy for others but tinged with identification (my team, my child); far enemy – envy
Equanimity (upekkha): Near enemy – indifference; far enemy – anxiety, greed
http://www.insightmeditationcenter.org/books-articles/dhamma-lists/
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I just wanted to pass along a PM I received from PattyPeppermint, in case those don't see her thread.
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Thanks. I am in the hodputal. Was admitted late last night. Uncontrollable vomitig , diahrea and fever
Thanks for checking on me. Hope you are Doing well
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She thinks it might be another UTI.
Sending love and light, prayers and strength to Patty.
XOXOXOX
Madelyn
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A while back we were sharing about taking risky trips when we already live with risky health.
I mentioned that my friend with frequent gi tract blockages went on pilgrimage to Mexico City.
At the Basilica of Our Lady of Guadalupe, she lit these two front votive candles for all who are suffering –
And yes, she did experience a blockage while out of the USA and lived to come home and share her important stories and images.
Blessings on all our journeys - whether coming home or going Home.
much love as dawn approaches, Stephanie
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Special prayers for well being and relief to Patty, your friend Stephanie, you and all those on hospice (Hope, M360, Nancy). May your days be filled with inward healing, love and peace. Holding you all in the light. (((Hugs))) Sleep well Stephanie.
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