A place to talk death and dying issues
Comments
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To Blondie, M360, Kath/tobycc, Bonnie, Brenda, Stephanie, Rosevalley, and all who are here, with great respect and admiration of your grace and courage - Good Morning! Wish you a better day today!
Taken in Greece, 2014.0 -
Honestly I just got the feeling with hospice that they would try all the cheap stuff first and then once I hit the wall (which was me in Dec and Jan) then no guarantees they might consider moving up a notch. to what no one would say. My husband couldn't figure out how they are fine with oxygen and no to IV fluids or IV meds assist that route. Neither of us felt like I wouldn't have to suffer first. So for now I am off and will get one more shot of faslodex next week. Hospice does have support services for my kids and I would like to take advantage of that.
I finished my paperwork for the DWD meds and I never heard of the other med ellavil but the seconal works and that's what matters. I figure I need it to send me on my way painlessly. I pray with the fluids and assist I don't puke. This will allow a passing when I can decide and be with my girls. I didn't want to die in the house but DH wants me to die in the house. Sigh... yesterday he took a sick day as we signed the DWD med paperwork and held each other on the bed, napping and just cuddling. At the end of March we will be married 27 years, trying to savor what's left of our marriage after the ravages of 9 years of breast cancer. I have been blessed that they have been mostly good years and we weathered much. I will miss everyone so very much and hope they take care of themselves and are happy.
M360 drowning doesn't sound like much fun either. Both Stephanie and I have catheters to pull off ascites and I would pop like a tick if it wan't for that catheter. It saves me. Such hard choices we face these days. The meds are stupidly expensive but I guess it's that expensive cruise I denied myself, only this one carries me to the other shore. What's retirement for anyway?
May we be free from suffering and pain and may beings be happy. love you all.
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much love back to you rose:)
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Got another UTI.. more antibiotics to choke down. Oy.. fluids today hope it flushes my kidneys. I need to keep everything running for a week or at least a half week until my paperwork and meds get filled. Not feeling too great queasy.. started the day with reglan... then cipro then zofran.. ugh. pray the med stays down. Need to go start my normal saline... have a good day.
Blessings Blondie, M360, Stephanie and Brenda...to all I missed too. Lovingkindness to you all. rosevalley
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M360 --- what can I say -- beautiful. Your remind me of my mother -- fearless and caring only for others no matter the circumstance. The world is better with people like you. Much love and respect to you and your girls.
Praying for you daily. And THANK YOU.
Dawn
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M360 I hope you got a great shade of purple in your hair! I hope it was super fun and you enjoyed it and the results are stunning. I pray Blondie and Stephanie are comfortable. Ptty I heard you were in the hospital again. May you get better and back home quickly!
I am blessed that today was a "good day" very little nausea and it was sunny and we took a drive in the country. I got out of the house and saw birds, mountains with snow, rolling hillsides and farmland. It was just a real treat to get out. My DH and DD3 and I and we enjoyed getting sunshine. A day like today can just make me feel so blessed to be alive. I am profoundly grateful for a day of comfort.
May you all be free from suffering. I think of you all and hope for your well being and comfort. love to all rosevalley
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OH ROSE! This just makes my heart dance! So thankful for your happy day. May you have many more.
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Thank you. Lulubee- our journey is so similar.. ILC 2007 until now and many of the same meds. Lucky you not to have it go past the bones. well wishes to you. A good day is a cause for celebration.
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Hi Rose,
It seems like we also have similar Buddhist practices - loving kindness, compassion, empathetic joy and equanimity - the 4 abodes that practically guarantee happiness in this lifetime and benefit in the afterlife.
Thanks for giving me a boost in joy yesterday, by sharing your joy in the ride, the day, the time with your family. Sometimes a change of scenery and perspective really pops us out of a limited view. And your joy multiplies mine, Rosevalley.
Gratitude for your happiness, empathy for your suffering, steadiness in our going and loving kindness always!
May we all dwell in the abodes, including ease of well being...whatever our medical or physical situations.
Off to drain and nap. Thanks again for teaching me daily draining dear Rose. My life is so much better because of you!
warmest healing wishes, Stephanie
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Rosevalley, i am so happy for your good day and outing , i hope you get many more. Loads of love right back at you.
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I took off a liter too today. I know when I fill up it increases my nausea and general discomfort. At this point the cost of seconal is oppressive but my retirement will pay for it. I will fill the script and not fuss about the cost to exit painlessly. Which is what pharmaceutical companies want.. shut up and pay. My options are so limited. I feel as you do Stephanie that our human life is most precious and sweet Buddhist and all other faiths I am sure feel the same sweet joyat being alive with their loved ones. Sliding along the edge of death for so many years as driven the point home that the simple delights... sunshine, beauty laughter, nature and company of those we love are the treasures here on earth we long for. To look anywhere for "riches and joy" is to be mislead.
Buddhism has taught me that to cling to life and pleasure/ no pain is to suffer. There will always be pain and comfort as they are opposite of the same reality.. you don't get one without the other. As Thich Nhat Hanh put it.. a non-tooth ache is a wonderful thing. But do we ever think of that? Non vomiting is a wonderful thing- of this I am most certain. He also said that walking on this earth is the great miracle not walking on water. I used to take refuge in Jesus and in my Quaker back ground, and Jesus still makes my heart lighter. Buddhism has brought me great understanding about life that I didn't have before I started being a "lamp unto myself," and looking and reading and trying to be mindfully awake to my life. I am grateful for these traditions that have taught me to love my fellow creatures and people on this earthly journey we all share. It makes me weep with compassion to know we journey together. To love is to jump ship from self and move to the other shore.
with love to all of you today and all days.
rosevalley
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i have been searching the internet for an answer to a question that is very important to me. I have not had much luck and i am hoping someone on this site can help. I was diagnosed stage 4 with 3 bone mets in november 2015. My question is how do women with stage 4 typically die? I know the root cause is bc but what is the emergent reason: lung cancer? Infections? liver failure? I guess the percentages or averages is what im looking for. I watched both my brother and mother die from lung cancer and i dont think i could bear that ending. Any help would be greatly appreciated.
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Lissalou. I'm sorry about your mother and brother. I'm sure it was horrible. Let me be the first to reassure you that you don't die from bone mets. You can live a long time with them.
As far as answers to your questions, I don't know. I do know it takes time to wrap your head around the diagnosis. get a treatment plan going and see how you respond.
I have never had any symptoms from my mets just side effects from the drugs, mainly fatigue. I have talked openly with my MO about quality of life but to squeeze out as much time since I have little ones. He told me not to worry about the cancer. It was his job.
Easy for him to say, he didn't have progression but I'm going to try my darnedest to make it four more years and then set a new goal. There's all kinds of new meds just approved and in the pipeline.
Hope someone can help you with your fears.
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Lissalou- listen well to Zillsnot me. You won't die of bone mets unless you refuse to treat them. People can and do live years with bone mets. I m sorry about your Mother and brother's deaths being traumatic. It might be helpful to leave the worry to your oncologist and try to live each day fully. In that way you take the bite out of cancer! If you take that day as yours and refuse to give in to fear then cancer loses. I hope you will find some peace with your diagnosis and not fear and sorrow. Perhaps a counselor or Social Worker from your oncology center might help you cope. Wishing you peace and non fear.
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anyone heard from Blondie ? I seen it was like jan21st last time she posted. I've called her phone but never get an answer or be able to leave a message. Hoping she's OK
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ive heard that many times you won't die with just bone mets. My mo strongly disagrees with this.
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Anyone have experience with a severance package? I have been the CEO of a non profit for 23 years,
Fiscally we are sound. Wondering about disability, cobra, weeks of pay, etc I have a big fundraiser next weekend, and it is well over 600 people and many I see rarely. I know everyone is thinking, OMG, she looks sick....after losing 40 pounds since November
Hubby and I will sell house, and go to our tiny home in the mountains of TN
Prayers for all of you
Kath
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HI Tobycc/Kath,
Sounds like you have at least 2 big work hurdles before you - the party with peoples's reactions and negotiating your severance package.
This bco topic/thread addresses many of your latter concerns:
Financial and Career Implications of Cancer
I too deal with many people's projections about how I look and how I'm doing. I treat them all as gestures of loving concern, even if they come across as fearful, controlling, distancing. They are trying to protect themselves and also me from harm. Cancer is the harm. We aren't. It may have its way with our physical being, but our spirits can shine through. Gauge your energy and accept the heartfelt positive projections while channeling the fearful negative ones into the great all for the good of all.
Yes, I'm from California and that's how some of us pray to be released from fear and embraced by love.
best, Stephanie
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Hi Lissa,
re. death from bone mets
I've been living in the eol (end-of-life) cancer world for many years and remember the bad, old days before bisphosphonate drugs (Zometa and Xgeva). Way back when, bones crumbled and there was much pain before the person died of hypercalcemia - the release of calcium into the blood stream. These drugs have basically eliminated those deaths (unless, as Rose says, you leave bone mets untreated).
Unfortunately, most of our images of cancer deaths are outdated and based on who we knew and how they died. So, maybe we haven't updated our images or our information. Some of those "survival with bone mets" stats still reflect those bad, old pre-bisphosphonate days.
Lissa, my dad also died of lung mets and I walked him through it, so I saw every step of his process. Even though it was 18 years ago, his oncologist, the hospital and our local hospice were able to help him with a variety of interventions, including soothing. But the images from that time can still haunt me.
Since you don't have lung mets now, anticipating that you will and that you will suffer the way your mother and brother did is a waste of your precious life energy. I encourage you to live one day at a time, get the best possible care for your bone mets (including complementary, if that suits you) and do your best to let go of fear and worry (many with mets take antidepressants or anti-anxiety meds and do supportive mind-body practices).
btw, my story continues. I too have lung and pleural mets, first diagnosed a year after my father's death. Several times during the past 8 years, it was expected that they'd kill me soon. They didn't. Now I've had liver mets for over 2 years and we're still waiting for them to kill me.
This can be a long, slow process.
How each of us does depends so much on the nature of our cancer and the care we engage to help us live as long and well as possible.
LIssa, it's up to each of us to work toward a livable life, since none of us know in advance the exact timing, cause and circumstances of our dying.
As I often say, "living well is the best revenge against cancer."
I hope you can find your living well now and that it will serve you for the rest of your one wild and precious life".*
warmest healing wishes, Stephanie
* The Summer Day
Who made the world?
Who made the swan, and the black bear?
Who made the grasshopper?
This grasshopper, I mean-
the one who has flung herself out of the grass,
the one who is eating sugar out of my hand,
who is moving her jaws back and forth instead of up and down-
who is gazing around with her enormous and complicated eyes.
Now she lifts her pale forearms and thoroughly washes her face.
Now she snaps her wings open, and floats away.
I don't know exactly what a prayer is.
I do know how to pay attention, how to fall down
into the grass, how to kneel down in the grass,
how to be idle and blessed, how to stroll through the fields,
which is what I have been doing all day.
Tell me, what else should I have done?
Doesn't everything die at last, and too soon?
Tell me, what is it you plan to do
with your one wild and precious life?
— Mary Oliver
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Rosevalley,
This is such a classic, perfect and beautiful you post. How can anyone fail to love you and respond in kind and loving kindess.
Reading it and weeping. Wishing you well, my friend of a moment in this lifetime. My friend for eternity outside of time.
love for all today and all days, Stephanie
"…our human life is most precious and sweet Buddhist and all other faiths I am sure feel the same sweet joyat being alive with their loved ones. Sliding along the edge of death for so many years as driven the point home that the simple delights... sunshine, beauty laughter, nature and company of those we love are the treasures here on earth we long for. To look anywhere for "riches and joy" is to be mislead.
" Buddhism has taught me that to cling to life and pleasure/ no pain is to suffer. There will always be pain and comfort as they are opposite of the same reality.. you don't get one without the other. As Thich Nhat Hanh put it.. a non-tooth ache is a wonderful thing. But do we ever think of that? Non vomiting is a wonderful thing- of this I am most certain. He also said that walking on this earth is the great miracle not walking on water. I used to take refuge in Jesus and in my Quaker back ground, and Jesus still makes my heart lighter. Buddhism has brought me great understanding about life that I didn't have before I started being a "lamp unto myself," and looking and reading and trying to be mindfully awake to my life. I am grateful for these traditions that have taught me to love my fellow creatures and people on this earthly journey we all share. It makes me weep with compassion to know we journey together. To love is to jump ship from self and move to the other shore.
"with love to all of you today and all days."
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Stephanie, that Mary Oliver poem is one of my favorites! It has been a source of inspiration to me for many years. Here is another of my favorites:
When Death Comes by Mary Oliver
When death comes
like the hungry bear in autumn;
when death comes and takes all the bright coins from his purse
to buy me, and snaps the purse shut;
when death comes
like the measle-pox
when death comes
like an iceberg between the shoulder blades,
I want to step through the door full of curiosity, wondering:
what is it going to be like, that cottage of darkness?
And therefore I look upon everything
as a brotherhood and a sisterhood,
and I look upon time as no more than an idea,
and I consider eternity as another possibility,
and I think of each life as a flower, as common
as a field daisy, and as singular,
and each name a comfortable music in the mouth,
tending, as all music does, toward silence,
and each body a lion of courage, and something
precious to the earth.
When it's over, I want to say all my life
I was a bride married to amazement.
I was the bridegroom, taking the world into my arms.
When it's over, I don't want to wonder
if I have made of my life something particular, and real.
I don't want to find myself sighing and frightened,
or full of argument.
I don't want to end up simply having visited this world.0 -
Kath, Ending my professional career involved 1) Taking 90 day medical leave, for which I received employer based Short-Term Disability (STD)benefits and ongoing group health insurance benefits (and life insurance benefits) at the same cost as that of any employee, 2) Applying for Social Security Disability Income (SSDI) and employer based Long-Term Disability (LTD) before the end of that 90 day period, 3) Resigning from my position at the end of the 90 day medical leave, by which time my STD benefits had ended, 4) Continuing to receive employer based group health and life insurance benefits at the same cost as that of any employee as I awaited the LTD carrier decision on my application for benefits, 5) Receiving approval for SSDI, effective 6 months past my last day of work, 6) Receiving approval for LTD benefits immediately after the SSDI was approved, which allowed me to continue receiving my employer based group health and life insurance benefits, 7) Receiving approval for Medicare two years from the effective date of my SSDI, at which point Medicare became my primary health insurance, 8) Receiving approval for employer based LTD benefits to continue along with group health (now secondary) and life insurance benefits at the two year "effective disability mark" (two and a half years after my last day of work). I continue to receive SSDI, LTD, Medicare, and employer based group health insurance and life insurance benefits. I never had to rely on COBRA for health insurance. Your HR director should be able to explain your employer based benefits and how best to apply for and coordinate them.
With regard to seeing people likely to be concerned or unsettled by your appearance, you might want to consider first what your goals are for being present at the fundraiser while being true to yourself and your own needs. (I realize it is a fundraiser, but you may have other goals as well.) Perhaps preparing several phrases or sentences might help to keep you as grounded as possible while also not going into the specifics of your medical situation when others ask about how you are doing, weight loss, etc. I would imagine that participating in such a public, significant event as you know you will be ending your career might be psychologically (as well as physically) challenging, so giving some thought toward how you wish to present yourself and how you will both support yourself as well as allow trusted others to support you will help you to weather any expected or unexpected storms.
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Holding so many close to my heart and hoping for an abundance of love, peace of mind, comfort in all ways possible, moments of joy and awareness of beauty, deeper understanding, tolerance for others' differences, deeper connections to those who are trusted and trustworthy....
Blondie, M360, Rose, Stephanie, Kath, Terri-C, Zills, Xavo, Susan 3, Woodylb, MyMomsKeeper, Lulubee, Lissalou, Patty P, Gator Gal, 2Athena2, all those who visit from time to time, all those who lurk.
I think of this place as one that is held not only by the edge dwellers, but also those who see the edge and are moving closer to it, those who see the edge from afar, those who don't really know where they are in relationship to the edge, those who want to understand the edge a piece at a time. Exploring it together, with tolerance--and mercy shown toward differences and unique perspectives and needs that may not be our own, creates the safety and trust and compassion we need in order to be as fully present as we can.
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Brenda, thank you discribing what this site is about and it is so true. Thank you for stating it so simply.
Wonderful ladies !
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The topic of illness trajectories returned to my mind as I'm in another period of symptom increase – weight loss, more ascites, pain and sleeping. I'm thankful my nausea is bearable with the drugs and I've no vomiting!
Maybe I'm on trajectory 1: short period of evident decline, typically cancer as shown in figure 1 in the article on illness trajectories in palliative care, but my course of cancer has been closer to that of a chronic disease, trajectory 2: long term limitations with intermittent serious episode.
It's impossible for me to tell just what's likely to happen next - whether increasing velocity into the slide toward death or another bump up to survive longer at lower level of function. (btw, my screen name is tongue-in-cheek, because I have survived a very long time with advanced cancer. I'm claiming what's true, not what I hope will be true.)
I hope this article, especially figures 1 and 2 are helpful for others who are facing decline and death from cancer, other diseases or dwindling. I suspect many have aging parents who are slowly dwindling. Because it's an article on palliative care, figure 2 shows the new model of beginning palliative (both-and) care earlier in the diagnosis rather than waiting for hospice (either-or) care after every treatment option and the patient have been exhausted. And it's written in plain English! It's a real plus in a medical article.
Many blessings to all, dear members, Stephanie
P.S. Brenda, your capacity to recognize and include all participants who write here is truly amazing. Thank you!
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Oh I have enjoyed the Mary Oliver poems and content of the posts! Thank you. Brenda you do have wonderful insightful posts and an inclusive way with them. I know I appreciate that and feel more of a community because of it. I have always loved that about a Quaker Meeting that the Meeting members "ministered through the spirit" when they spoke in Meeting. I found I learned and profitted so much from the heartfelt stirings of the spirit from folks as ordinary as any. Teachers I would think come in many forms... there for us. No paid clergy as God still speaks; should we be of the mind to listen. I feel that way about this site. I will sometimes mull over a post carefully considering the way it sounds, it's content and meaning. I feel we ALL have gifts to teach and share, just by being ourselves and true to our nature and experiences.
I harvested 2 sunny daffodils to put in a small green vase on my dresser. They are perfect bursts of sunshine. Such an amazing shape and so delicate. It is cold, crisp and sunny for the next several days and my spirit is very fine. I feel better than I have in months. No puking in days and I am able to eat yogurt and soup. I must have more lives then a cat to feel better after the cancer wrapped itself around my guts and effectively closed most of it off from Dec till a week ago. The faslodex must be lessening cancer's grip. I am profoundly grateful and mindful of how many times I have crashed, burned, resurrected and hobbled off to see more time. My DD3's birthday is coming and she will be 15! I want to enjoy this time with her, with us as a family!
Cancer is like being hunted. You are a deer on an island. There is a hunter with amo and need to consume you to feed itself. You can hide, wander, skirt death, shots and live as long as you stay - a step ahead of the hunter. The odds are not in your favor longterm. In my heart and experience I know this. I will go down and pick up my DWD seconal and put 3,000.00 on my credit card. This will give me my way out painlessly and cleanly - a death with dignity when my time is clearly here. I did pull off 200 cc less fluid then I normally pull off in my pleurx this morning. Do I dare to nurse hope? Am I like the boat people in their raft...clinging to another day? Maybe.. but I do so cherish this one wild and wonderful life.
Blessings and lovingkindness to you all. May you be free of suffering.
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Just for a reality check on the price charged to patients from Marathon Pharmaceuticals 100 caps of Seconal is $ 3, 068.81. My Catholic Health Insurance Providence does not cover Death With Dignity meds and they will not guarantee a painless vomit free death with hospice either, so it will come out of my retirement. Our Catholic Health care is the only healthcare in the state that does not honor the law for terminal patients. I find that illegal and should not be allowed. all insurance companies should be required to follow the laws of the State regardless of their beliefs.. they have to pay for birthcontrol and DWD meds should be no different.
I paid for healthcare and my legal choice should be covered. Now it's like paying twice. Our hospice benefits are very sparce and it would be easy to go over 3k since no inpatient services are covered, no evening off hours are covered either. Hospice inpatient services run 200.00 a day with a nonrefundable 3,000.00 retainer paid upfront for their inpatient fostercare/inpatient facility. If you go into their facility and die in the next 24 hrs no money is returned. It's for their bottom line not yours.
So from an ethical stand point is it ethical to charge $3, 068.81 for a painless death with dignity? How does a poor person dying come up with a sum like this? Could this pharmaceutical company make a profit handsomely off 1/2 that amount? Raises some interesting questions as a society. Personally I think we should have a single payer healthcare system with riders, that folks can purchase to up or pad benefits. I won't vote for Bernie Sanders (not enough experience to run this entire country) but I think Canada's/Sweden/UK's healthcare beats ours. Just my personal opinion not meant for any debate. Just I bet those folks in other states won't have a clue what the DWD meds cost without insurance coverage. FYI
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I totally agree with you Rosevalley. DWD medications should be covered by any and all insurance and affordable for those who are private pay. It should also be available in every state. I know you made a difficult decision to spend that amount, but I support you 100%. I am happy that you have it available when you feel the time comes. But, I'm much happier that you are getting some relief from the Faslodex and feeling better. Funny you mentioned daffodils. We have a frigid wind blowing here with a forecast of snow so I went out and cut a bunch today and have them on the mantle over a nice warm fire in the fireplace. Here's wishing you many more puke free days and lots of daffodils.
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Brenda, thank you for your generous description of this thread, for your broad strokes that so lovingly encompass us all here. I usually hold back from posting in this thread out of my deep respect, awe, and tender admiration for those here who are so much nearer to the edge than I am at present.
So why am I even here? Well, on December 17, 2013, I came within a couple of hours of my lift-off from the edge. The bc suddenly showed up in my common bile duct and glued it shut, whereupon acute pancreatitis set in (oh dear God, the pain; just unbelievable that a body can hurt that bad and live-- and I say this having experienced natural childbirth!), then my gallbladder became infected and distended, and then my liver totally failed. I was going down fast, and I knew I was dying. I felt the veil floating down around me, a sheer layer softening my view of all that is here, gently drawing me away from present cares. But an emergency surgery just in the nick of time and an effective change in treatment turned me back around. Honestly, it was a miracle. I still have extensive mets in almost every bone, but the biliary tree is quiet now, thankfully. But I have seen the edge and I know it is still Just.Over.There.
That near-death episode is what drew me to this thread. Frankly, I was so scared of what I might find here. But the beauty and reality expressed in this thread have helped me so very much. You are all vibrant, radiant souls and I stand in gratitude for your lovingkindness and grace. May we all be blessed.
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Oh dear Lulubee, thank you for sharing here too.
Selfishly, I so appreciate each member's stories to feel more closely connected. I've been here less than 3 months & am still sorting everyone out.
And I actually know how acute pancreatitis and lingering pancreatic insufficiency feels having experienced it as a complication from a medical procedure.
What a close call you had and small wonder you're curious about death itself and how it unfolds.
I'm grateful that your studies here in the school of life and death are bringing you peace and confidence!
There's something I want to write about, so I'll start a new entry now.
Meanwhile, I'm holding you and everyone else too in a field of healing and loving kindness!
Stephanie
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