A place to talk death and dying issues
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We have DNR - do not resuscitate - here in Canada and I'm sure you guys do as well. I will have that as part of my wishes. My Mom put one on herself at 66 and died at 67 of an unknown liver disorder!
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akShelley- Your trip sounded wonderful. You made wonderful memories and had fun! Mission completed. To Garden is to Believe in Tomorrow. How perfect. May your summer be perfect.
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The life is a garden theme got me humming this tune about how death is a garden for some…
https://www.youtube.com/watch?v=nlaoR5m4L80
Iris Dement - Let the Mystery Be
Everybody's wonderin' what and where
They all came from
They all came from
Everybody's worryin' 'bout where they're gonna go
When the whole thing's done
But no one knows for certain and so it's all the same to me
I think I'll just let the mystery be
…
Some say that they're comin' back in a garden
Bunch of carrots and little sweet peas
I think I'll just let the mystery be.
xxx
I'm in the mystery this morning. Lovely zone, this transition zone. So much to learn and experience still. Will try to send an update, but words fail me.
healing regards, everyone, Stephanie
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Reading some news this morning and thought this piece from ASCO might contribute to this conversation:
6-JUNE-2016
Advanced cancer patients receive aggressive care at high rates at the end of life
UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL
CHAPEL HILL - In the last month of their lives, younger cancer patients continued to be hospitalized and receive other aggressive treatment at high rates, a University of North Carolina Lineberger Comprehensive Cancer Center-led study found.
A national health claims analysis of cancer patients who were younger than age 65 and had metastatic disease revealed that nearly two-thirds were admitted to the hospital or visited the emergency room in the last 30 days of their lives. The researchers said nearly a third of patients died in the hospital.
The preliminary findings (LBA 10033), presented Monday, June 6, at the 2016 American Society of Clinical Oncology Annual Meeting in Chicago, raises concerns for clinicians and researchers that there is substantial overuse of aggressive care for patients with incurable cancers, even after ASCO issued recommendations in 2012 encouraging physicians to reduce aggressive end-of-life care.
"Cancer treatments have side effects, and as patients get closer to the end of life, aggressive treatments can also be less effective," said study co-author Aaron Falchook, MD, a resident in the UNC School of Medicine Department of Radiation Oncology. "In essence what we're doing is we're giving patients side effects without giving them the benefits of the treatment, and that's really the fundamental problem with aggressive care at the very end of life."
For the study, researchers analyzed claims data from the HealthCore Integrated Research Database for 28,731 patients from around the country under age 65 and with metastatic lung, colorectal, breast, pancreatic or prostate cancer. They looked for how often patients within the last 30 days of their lives received chemotherapy, radiation, an invasive procedure, went to the emergency room or were admitted to the hospital, or received intensive care; or died in the hospital.
Across the five types of cancers examined, the rates of patients receiving one or more forms of aggressive care in their last 30 days of life ranged from 71 to 76 percent.
Looking at chemotherapy alone, they found that rates ranged from 24 percent of prostate cancer patients receiving chemotherapy in their last 30 days to 33 percent of patients with breast cancer. Rates of hospital admission or emergency room visits were some of the highest, with 62 percent of colorectal cancer patients and 65 percent of lung cancer getting hospitalized or visiting an emergency room.
"Overuse of aggressive care at the very end of life for a cancer patient can translate to increased burden on patients and their families," Falchook said. "If these treatments are making patients sick, and if patients continue to go to the hospital, this can reduce their ability to really spend time with their loved ones at the end of life, and to get the most time out of the life that they do have left."
And while Falchook said some treatments can be not only recommended, but beneficial to patients at the end of their lives to help ease suffering or pain, it's important to be thoughtful about delivery. For example, researchers said radiation therapy can be used to reduce pain. "The goal shouldn't be that there should be zero percent of patients getting radiation in the last 30 days of life, or chemotherapy, or any of these treatments," Falchook said. "There is some degree of what we'd call 'appropriate care' at the end of life. The goal is not zero, but finding that three-fourths of patients continued to receive aggressive care was surprising."
Ronald C. Chen, MD, MPH, a UNC Lineberger member and associate professor in the UNC School of Medicine Department of Radiation Oncology and the study's first author, said that physicians should be having earlier discussions with their patients about palliative care, which is treatment that focuses on relieving pain or other symptoms. Palliative care focuses on maximizing a patient's quality of life.
"Is it hard to assess when somebody has only a month to live? Maybe," Chen said. "But palliative care discussions, and hospice enrollment, should happen much earlier than a patient's last month of life."
Researchers also found that rates of aggressive care did not decline after the release of ASCO's 2012 "Top Five" recommendations in 2012. The recommendations advised against using treatments to stop, slow or eliminate cancer for patients with solid tumors for whom there is not strong evidence for the treatment's clinical value. Instead, ASCO recommended using palliative care or supportive care. The recommendations were issued as part of the Board of Internal Medicine's "Choosing Wisely" campaign.
"What this study shows is that recommendations by themselves may not be enough to change practice," Chen said. "Along with published recommendations, more interventions targeted toward physician and patient education may be necessary to get actual changes in practice."
Related to their finding of high rates of aggressive care at the end of life, the investigators also found that only 15 to 19 percent of patients received hospice services.
"Studies have shown that hospice can help patients preserve their quality of life at the end of life," Chen said. "We think there's too much aggressive care, and it might relate to the fact that too few of these patients are enrolled in hospice. It's not clear which phenomenon is causing the other, but I think these are complementary findings."
Chen said there were limitations of the study including the fact that they could not determine the intent of the treatment delivered in their study of aggressive care. More research is needed to identify drivers of the use of aggressive care.
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In addition to Chen and Falchook, other co-authors include: F. Tian, R. Basak, L.C. Hanson, N. Selvam, and Stacie B. Dusetzina. The study was funded by the North Carolina Translational and Clinical Sciences Institute and the UNC School of Medicine Department of Radiation Oncology.
Disclaimer: AAAS and EurekAlert! are not responsible for the accuracy of news releases posted to EurekAlert! by contributing institutions or for the use of any information through the EurekAlert system.
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Awww - Stephanie, that is one of my favorite songs and Iris Dement is one of my favorite singers. I admit, she is different, but I love her anyway. You quoted one of my favorite verses about the carrots and little sweet peas but her is my other favorite verse.
Some say they're goin' to a place called Glory
And I ain't saying it ain't a fact
But I've heard that I'm on the road to Purgatory
And I don't like the sound of that
I believe in love and I live my life accordingly
But I choose to let the mystery be
Read more: Iris Dement - Let The Mystery Be Lyrics | MetroLyrics0 -
This road would be soo much easier if I didn't have kids. My DH will be relieved and sad but he will do ok. The choices I would make alone would be so different. I would have left a long time ago if I was single. Something to think about.
Thank you for the poems! Let It Be.
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Rosevalley, the road might have been easier if you didn't have kids but then they wouldn't had the opportunity to have a wonderful mother. I know this time must be so difficult for you. Know that we are all here praying and thinking about you. Hoping that you get some relief soon.
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My dear Rosevalley,
Yesterday morning I began pondering the different choices we make and how circumstances (parenting, partnering, caregiving, bucket lists) affect those choices. We each walk such unique paths with our shared diagnoses.
Then I read of your decision to go ahead with weekly Taxol...which makes perfect sense to me, because of your circumstances - particularly your DD3's inner and outer needs.
Not to argue with you, Rosevalley, but I do think you are a master mom (like a master musician, chef, gardener). You do what needs to be done. It is just what you do. I admire you so much and learn what it takes to be a mom, something I never did.
I chose to have a tubal ligation in my teens and never looked back. Of course, I was expected to die young of my genetic condition and each of my bio-children would have a 50-50 chance of inheriting it - so it didn't make sense to me to orphan possibly ill offspring. Even though we could have adopted, the orphaning of adopted children would have been devastating too, as you know.
My life just didn't take me there and now I'm neither partner nor parent. Yet, I think most humans are meant to be "we" people, not "me" people - to live in relationship and community with others - human, animal, plants (gardens!), ecosystems, cultures and ideals.
Being single and not being a mom doesn't mean I'm able to always put myself and my own needs first. Others' needs are important to me - I just don't give at home, but am in many longterm, committed relationships of a non-romantic type. I serve the greater good wherever and whenever possible.
Today is the first day of California's Aid-in-Dying option.
I learned that my doctors are in a Catholic healthcare system and can't prescribe the drugs.*
A few months ago I wrote here about my meeting with the local Compassion & Choices representative, Carole van Aelstyn, who talked me through what they do and what I'd do to voluntarily end my life due to terminal illness. ** I was offended by her attitude that of course my life wasn't worth living and I could choose this option. (should choose this option by others' standards?)
I still don't think I want the DWD option, but I've had so many different surprises during these past 20+ years of outliving my prognosis. Maybe I will at some point.
Which brings me to another impasse. Unless I take definite measures to end my life (drugs, voluntarily stopping eating and drinking), my cancer seems like a very slow way to go. Just deciding to not pursue aggressive treatment (I still take femara because it still controls my lung/pleural mets and I want to die of liver mets and cachexia), doesn't mean the switch is flipped and I'm dead.
For the entire 6+ months I've been at bco, I've been on hospice. And I keep broadcasting and receiving messages from the universe that I'm still meant to be here.
It would be melodramatic for me to cry wolf again and say, "I'm dying."
Yes, a little or a lot more than many people. Yet, life still flows through me.
It's a mystery.
I think I'll just let the mystery be.
Thanks for prompting my pondering, dear Rosevalley. I hope it's somewhat interesting or helpful to you and others who read here.
Sending warmest healing regards for all, Stephanie
* Can't prescribe drugs http://www.pressdemocrat.com/news/5657751-181/new-...
**Compassion & Choices http://www.pressdemocrat.com/news/5668078-181/assi...
A little song to share by local Threshold Choir musician, Melanie DeMore:
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It fries me to the marrow of my being that Catholic Insurance that WE PAY FOR is allowed to restrict our medical and legal options to end our suffering by refusing to pay for death with dignity meds. Or even to allow those physicians who are ok with it to write a script. (I do think writing the script should be voluntary and not required.) I think insurance should be forced to pay for death with dignity meds. They pay for birth control and cover that - which they are against and I don't see what the difference is. My one DD has helacious periods and we have her on birth control to stop the excess bleeding, avoid anemia and they cover it. What's the difference? I will die of my cancer anyway no matter what and hospice and the medical community can't even control the symptoms of relentless N/V and misery. How is dying like that, choking on your own vomit, compassionate?? Cruel and mean spirited if you ask me. Especially when there is a sweet easy compassionate and dignified alternative!! I had to pay 3,068 on our credit card for my bottle. I also have paid 2,000 in copays for my insurance plus 600 for the policy the first few months of this year. I should be able to access the care I need. It is obscene to force dying cancer patients to pay for DWD meds. When it's time and no more options I am taking it. I feel sorry for the folks who can't afford the bill.
If the voters passed the law and it's legal then all insurance should pay for it. Period. You shouldn't be able to write a policy in that state without covering it. Hit them at their bottom line and they will stop this nonsense of forcing patients into their value system. What a patient does should be between them and their physicians not "Catholic philosophy." If you believe it is immoral don't use the Law or the drugs. It's so simple. Same with abortion - don't do that if you think it's unethical and immoral. (support homeless kids,birth control, adopt those that are unwanted and educate foster kids - support life etc.) I know these are emotionally charged highly conflicted topics but we can coexist with tolerance. If the voters vote though it's the law.
I think the medical marijuana products should be available country wide. CBD oil has no THC ,no high and controls nausea. It's great; put drops under the tongue and relief. Why shouldn't these products be available when the need is so wide spread? Pharma won't back CBD oil because they make no huge amounts of money and yet folks howl in protest that it's from pot and the world will come to an end if it's legal. It works for many folks at controlling nausea. Isn't relief the point? No one is going to abuse a product that costs 45$ a bottle and gets no buzz!! The price might come down if it was more widely available and manufactured in larger amounts. The need is there, lets use what we have to make life better.
Stephanie I totally get where you are about feeling alive and dying. It's still living to wake up and feel precious sun light on your face to see the birds and flowers- to enjoy what you can- mug of tea, conversation, thoughts and memories. Life is SWEET. I used to wonder when I would see patients come in to the hospital very debilitated and restricted in their ability to move, help themselves or participate in life because of injury or disease or both. Yet some of these folks had great joy in life, accepted their lot and were grateful for the life they had. I was humbled by their example and awed by the fortitude and resolve they showed to live under the circumstances. Each person has to make the determination of when the line in the sand is crossed and suffering out weighs living. I am sorry DWD is being withheld from you as an option because of your Catholic insurance coverage. I pray your death from cancer takes the liver route and isn't miserable. Hugs and blessings to you. You have shown great courage. Just for the record I would have had a tubal if I had those kinds of genetic markers. You were very selfless and compassionate not to pass on genetic misery. Happy 60th Birthday my friend!
Forgive my rant on DWD because I feel it is a compassionate pathway for dying for some people. It has been legal for years in Oregon and has not been abused. Most terminal folks still use hospice. Individuals facing miserable circumstances with pending death should make the decision on how their lives end not insurance companies. Lovingkindess to you all. rosevalley
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Love you, my friend Rosevalley!
Just to clarify, my doctors can't prescribe the DWD meds, so I have to go doctor shopping to find someone who will - if that's the route I choose to take.
It seems that Medicare won't cover the cost, because it's federally prohibited.
But Medicaid (MediCal here) will cover the cost.
That's concerning because MediCal patients are among the poorest of the poor and often get substandard medical treatment for a variety of reasons.
Here are a few of today's news stories:
JUNE 9, 2016
California Aid-In-Dying Law Goes Into Effect
http://khn.org/morning-breakout/california-aid-in-dying-law-goes-into-effect/
Some are worried that low-income people will be pressured into choosing the option over more expensive long-term care.
Associated Press: California Aid-In-Dying Law Concerns Some Latinos, Blacks
California on Thursday becomes the latest state to allow the terminally ill to legally choose to end their lives, raising worries among some people in the state's large Latino and African-American communities that poor people with serious illnesses could be pressured to take lethal drugs as a cheaper option to long-term care. (Watson, 6/8)
Los Angeles Times: What We Know About Physician-Assisted Death From Oregon, By The Numbers
Oregon was the first state to allow patients with terminal illnesses to request medications that would end their lives. Though other states have since adopted similar laws, Oregon remains the best guide for what to expect in California when physician-assisted death becomes legal in the state Thursday. Here are some statistics about who has taken advantage of Oregon's aid-in-dying law since it took effect in 1998. (Karlamangla, 6/9)
Bay Area News Group: California's Right-To-Die Law: Four With Terminal Illnesses Consider End-Of-Life Options
Eight months after it was signed into law by Gov. Jerry Brown, California's controversial End of Life Option Act goes into effect Thursday. The law allows mentally capable adults, diagnosed with six months or less to live, to ask doctors for prescriptions to end their lives when they choose. (Seipel, 6/8)
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And yes, I have great joy with life and being alive - though I'm pretty physically limited by others' standards and even by my previous standards. I've lost a lot of function since the pleural mets dx in 2008. That really dragged down my ability to move and get out with the wild flowers, mountains, views, hillside rambles.
And the amount of time, energy and money gone to keep me alive is staggering, though I've worked hard to avoid the most costly treatment options.
Yet, there's still joy in living and loving!
subtle gusto! Stephanie
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Please forgive me for not writing more. I had planned to share more with you, but I have run out of energy catching up with PM's. Trust that I keep you all in my thoughts, hold empathy and compassion for you in my heart, and hope that peace and comfort along with beauty and joy envelop you in the midst of so many struggles and challenges.
Thinking of the gardening theme: Voltaire said, "Life is bristling with thorns, and I know no other remedy than to cultivate one's garden." Hmmm...that seems to apply both literally and metaphorically.
Lovingkindness to all....
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Dear Brenda,
Lovely to see you and hear-read your voice this morning.
You are in my loving, healing meditations as you cultivate your own garden.
Sending healing wishes for all who are living at the edge of life and death - Rosevalley, M360, Shelley, Juli, Barbe, Blondie and others who've slipped from view, but not our concern.
The sky is an amazing show this morning. If I weren't dying, I'd join the Cloud Appreciation Society.
https://cloudappreciationsociety.org
A little song for clouds and all of us lovers of both sides now...
loving kindness for all, especially our many listeners, Stephanie
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Brenda- Howdy! I am sure life is too busy taking care of your Mom and yourself. It was sweet of you to check in. I miss your posts. My prayer lists have you on it. gentle (((Hugs)))
Hi Blondi, M360, Stephanie, Hope and all others I missed. Lovingkindness to all. rosevalley
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Rosevalley, that was a GREAT rant and really tied up what a lot of us feel. Well done! I do know that when my parents were dying we were allowed to ask for morphine for them as often as we wanted. For my Mom I had asked the doctor "Can't you just OD her on morphine?" He said he couldn't, but we were allowed to keep asking for it. As she was in a Palliative ward they just gave it. It depresses breathing so she may have passed sooner but her ears and feet were dark purple and her urine was cola coloured so she was way beyond saving. (Also in a coma) She was only 67 so her heart was strong and kept her body going even as her organs failed. A painful way to die.
Why do you want to die of liver mets? I'm thinking brain so I don't know what is happening. My DH knows to keep me pain-free so I'm not worried about that part.
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Steph - how lovely to see your post with Joni singing from 1970. She was my friend and neighbor in Laurel Canyon/Bel Air for many years. She got burned by the record industry when she moved on to jazz, etc., but she is a painter and fighter, now ill from an aneurysm she suffered last year, and prior to that Morgellons disease. I am rooting for you to have pleasant days in a garden as I do. Many roses are in my home today. Rosevalley - sorry the Ibrance didn't work for you, I am on round #6 and its working thusfar. Please stay with us to help your children and share your thoughts. DWD should be a choice for us all. Brenda - love your garden thorns and all - remember the mythical thorn birds? Sending warm hugs () to all. I am using PM from now on for added privacy.
Claire
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I just got back from losing dinner.. some day I will learn liquids and stick to liquids. Sigh.. my gut is is just trashed. Anyway I didn't come here to bore you all with my ongoing misery. I am not miserable all the time just most of the time I feel odd, funky and bloated and if I eat over half the time I lose it. Stephanie knows and Hummingbird. We know what ILC and ascites NV is like. Thankfully there is just a small number of us. Wish it was zero.
Anyway I want to say what an amazingly beautiful, thoughtful, smart, loving, courageous bunch of women read and post here. I have gotten the sweetest PMs and thoughtful helpful messages, ideas to try, links and beautiful pictures and poems. They just make me cry with gratitude and happiness. I wish to meet you all and hope someday our spirits know each other. There is tremendous goodwill and love here. It is a blessing on my life and I appreciate it deeply. This is a hard road made easier by your kindness and sharing. I give you my thankful heart and lovingkindness in return. Much love rosevalley
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Love for you, dear Rosevalley!
Time for me to drain and nap, but I wanted to share some of this recent Sun Magazine article on the death guru - Stephen Levine who died last January.
Sending much healing love and light for all, no matter which phase of living and dying we're experiencing now, Stephanie
Excerpt:
We live in a society conditioned to deny death. It may be for this reason that many, at the time of their dying, feel so confused and guilty. Like sex, death has been whispered about behind closed doors. We feel guilty for dying, not knowing how to live. . . .
Observing the body's decay, the change in metabolism as we age, the middle-age paunch, the lowering of energy, the graying at the temples, the lessening of muscle tone, the loss of hair, how can we deny the inevitability of the falling away of the body? Experiencing the loss of loved ones, seeing that all we have ever known is in constant change, that we are the stuff of history, how can we disregard death?
How often, for instance, is one encouraged to contemplate the aches and pains of the flu as a preparation for death, as a means of melting the resistance to life? Struggling for satisfaction from moment to moment, we think of ourselves as either fortunate or unfortunate, little realizing the teachings of impermanence.
We seldom use illness as an opportunity to investigate our relationship to life or to explore our fear of death. Illness is considered bad fortune. We hold to models of good health and Pepsi-Cola vitality. We only think we are ok if we are healthy. But how, in this fixed idea of the acceptable, do we learn to open to the impossible? How do we allow ourselves to come into the unknown with an openheartedness and courage that allow life its fullness?
In the funeral home we put rouge on death. Even in the casket we deny our transiency.
At home in our favorite easy chair, we read in the newspaper of five dying in a hotel fire in Cleveland. Of ten killed in a bus accident on the freeway. Of three thousand crushed in an earthquake in Italy. Of the death of Nobel laureates in their laboratories, and of murderers in the electric chair. We partake of the "survivor's news," reinforcing the idea that "everyone dies but me." Sitting there, reading of the death of others, reassures us of our survivorship, of our immortality. The misfortune of others makes up a large percentage of the front page, creating the illusion of our good fortune. Seldom do we use the news of another's death as a recognition of the impermanence of all things, that all changes as it will.
And yet the acknowledgment of impermanence holds within it the key to life itself. The confrontation with death tunes us deeply to the life we imagine we will lose with the extinction of the body. But what is the truth of this sense of presence we experience, of timeless being, which seems to have no beginning, in which we sense no end? We imagine we will die only because we believe we were born. We don't trust that sense of endlessness, of edgelessness within.
Our suffering is caused by holding on to how things might have been, should have been, could have been. Grief is part of our daily existence. But we seldom recognize that pain in our heart that one fellow called "a deep weeping, a mourning for everything we have left behind."
A friend, reflecting on the time her cancer had been diagnosed as terminal, said, "Being terminal just meant that at last I acknowledged that death was real. It did not mean that I would die in six months or even die before the doctor who had just given me the prognosis. It simply meant that I acknowledged that I would die at all." In a society based on material gain, which imagines itself to be the body, which holds health so precious and fears death so much, it is often hard to understand that death is natural, even necessary for the continuance of life, both inner and outer. . . .
Seventy-five percent of the population take their last breath in a convalescent home or hospital. Most die in institutions where death is considered the enemy. I have seen many approach death in physical and spiritual isolation, seldom encouraged to open past their imaginings and fears, cut off in heart and mind from the loved ones who might share this precious moment. Unable to trust their inner nature, removed from life itself, they enter with painful insecurity and confusion into another realm of being.
I have watched many cling desperately to a rapidly degenerating body, hoping for some incredible miracle, anguished by a deep longing for fulfillment never found in life. I have also met those whose death was an inspiration to all about them. Who died with so much love and compassion that all were left filled with an unnamed joy for weeks afterward.
Few participate in their life so fully that death is not a threat, is not the grim reaper stalking just beyond the dark windowpane. Most fight death as they fought life, struggling for a foothold, for some control over the incessant flow of change that exemplifies this plane of existence. Few die in wholeness. Most live a life of partiality and confusion. Most think they own the body. Few recognize it as just a temporarily rented domicile from which they must eventually be evicted. Those who see themselves as passengers in the body are more able to let go lightly. . . .
There seems to be much less suffering for those who live life in the wholeness that includes death. Not a morbid preoccupation with death but rather a staying in the loving present, a life that focuses on each precious moment. I see few whose participation in life has prepared them for death. Few who have explored their heart and mind as perfect preparation for whatever might come next, be it death or sickness, grief or joy.
Who is prepared to die? Who has lived so fully that they are not threatened by their imaginings of nonexistence? For it is only the idea of death that frightens us. It is the unknown we pull back from.
How often are we like the battered child on the front page of the Los Angeles Times, being carried gently from the room by the compassionate matron, who reaches out over the matron's shoulder shouting, "Mama, Mama," to the woman in custody between the policemen on the other side of the room, arrested for burning the flesh and breaking the bones of this child? How many reach back for the hellishness of the known rather than opening into the unknown, with the patience and warmth that make room in our heart for ourselves and all others?
In some societies, death brings the whole tribe or family together in celebration and acknowledgment of the continual changing nature of life. During these celebrations, often a deeply spiritual context for this passing allows many to have profound experiences of their own true nature. For these societies, death is a continual opportunity to let go of the illusions of life, to see it as it is, and open in love to all about. - Who Dies?
http://thesunmagazine.org/issues/485/let_it_shine
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Who dies? We all do. No exceptions.
We all hope we die of a massive heart attack or in our sleep...unaware that life ends. Denial? Sure. Fear of the unknown? Of course it's fear of the unknown. We don't know what to expect of cancerland or the cells eating our bodies away. I am fearful of pain and nausea and vomiting. I am fearful of getting as sick, miserable and weak as I was in Feb of this year. I think dying and separating from my body will be a relief, but I have never died before so I do not really know. Birth ended up ok and I am happy to have had this precious life. I am hopeful death will end up well too. We all have to filter birth and death through our life experiences and belief systems then take the plunge!!
I am resolved to try and fight for life to get DD3 through camp and have some fun this summer. I probably won't make it through August as my cancer is very active. That's ok. I just can't get too sick to not be able to swallow the DWD meds. No lingering around the drain. Been there done that Dec-Feb. Can't help think I am here because I am supposed to tough it out and prepare my 15 year old for the inevitable. Happy to do that.
I watched a little hummingbird flit at our nectar feeder and then at the Fusia blooms in a hanging basket. Impossibly fast! How can sips of nectar sustain something spending so much energy to live? Amazing. The Gold finches were balancing on stalks of flowers eating the seeds. They love spent for-get-me-not seeds. They are so beautiful in their gold feathers. There were so many birds at the feeder it was like an out of control airport... mayhem! Zoom... zoom... nature is my favorite TV.
love to all. rosevalley
I accidentally posted this twice so deleted the other one. oops.
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Who dies? We all do. No exceptions.
We all hope we die of a massive heart attack or in our sleep...unaware that life ends. Denial? Sure. Fear of the unknown? Of course it's fear of the unknown. We don't know what to expect of cancerland or the cells eating our bodies away. I am fearful of getting as sick and weak as I was in Feb of this year. I am resolved to try and fight for life to get DD3 through camp and have some fun this summer. I probably won't make it through August. That's ok. I just can't get too sick to not be able to swallow the DWD meds. No lingering around the drain. Been there done that Dec-Feb. Can't help think I am here because I am supposed to tough it out and prepare my 15 year old for the inevitable.
I watched a little hummingbird flit at our nectar feeder and then at the Fusia blooms. Impossibly fast! How can sips of nectar sustain something spending so much energy to live? Amazing. The Gold finches were balancing on stalks of flowers eating the seeds. They love spent for-get-me-not seeds. They are so beautiful in their gold feathers. There were so many birds at the feeder it was like an out of control air traffic airport... mayhem! Zoom... zoom... love to all. rosevalley
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This is going to sound weird but do any of you wonder if dying means you have to meet up with folks you would rather not revisit? I was thinking of that and pondering. There is a reason to keep to the present moment... spares you these twilight zone trips into "what if?" Buddha was so smart.. I am not as enlightened. Staying perfectly grounded in the present moment is hard. My mind wanders and I follow it..
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Kezzie,
You ask where to start...You must start with a will...even the most simple one. You can even download a state specific one from Legal Zoom. com///If you do not start with this step then your state will dictate the will if you should die before you have done it..Believe me, it is not hard and you will be pleased to have done step one and then on to step two.
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I don't really want to see either parent when I die. I had a shitty life with them and one of my fears of dying is seeing them again. I know we're supposed to "forgive", but I don't want to see them.
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Barb-That's exactly what I mean. I don't want to run into my Dad again either. Too much. Been there done that. The 25% good times didn't erase the 75% icky. Rather conflicted on that score. I felt relieved when he left. I can forgive to a point. Hopefully what is left of us, minus the body and all that entails, will leave a spirit free enough to set all the past hurt aside. That would be quite a fun thing -very fun.
I would love to not feel weird and crummy. I watched a mystery with my DH last nigth and went to bed at 11. I had drunk a smoothie at 5:30 and ended up throwing up most of it. Then I had to take zofran and another ambien because I threw up the first one. You would think your stomach would empty in 5 hours... not mine. Cancer has constricted it all. All contents just sit. Every thing gets third spaced into my gut as ascites and hardly makes it to my kidneys. It's a whole rerouting of the gut. If they don't start Taxol soon it will shut again. My DH is always after me to drink protein shakes but they sit so heavy.
I watched a young boy yesterday walking a black lab teenager leggy and uncoordinated... all bouncy and happy- exceptionally full of life. The image has made me smile. My DD2 was working at Starbucks and had a Golden Retriever puppy come in (with its owner)and she sent a picture of the "cutest customer ever".. Good thing we have animals to share our world with. Have a good day.
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Dear Stephanie and Rosevalley,
Bless you both for the honesty and sharing you both do.
Because of the two of you I was able to help my ex-sister-in-law who has ascites because of metastatic pancreatic cancer. Some relief is on its way for her.
A flower from my garden to express my thanks.
JJ
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Just Jean- I hope the information helps your SIL. Ascites is a hard road.
I start Taxol tomorrow. Can't believe it. We will see where it goes. Wish me luck. I am still praying for Hope, Stephanie, Patty, Blondie, M360 and all others in Palliative care and hospice. (((Hugs))) Lovingkindness to all rosevalley
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Best of luck, Rosevally!! Please keep us posted. Hugs to you all!
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Good luck on Taxol Rosevalley. I was on it for 3 month. It look a month for my hair to start falling out, so I preemptively shaved it. Bad mistake as it started growing back immediately. I think if I would have let it be it would have just thinned.
Keeping you in my daily thoughts.
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Thanks, Rosevalley. She's in a very bad place. She's also just about the strongest woman I know.
You and everyone will continue to be in my thoughts and prayers.
JJ
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Dear Rosie , just popped in to wish you good luck on taxol. It gave me very god results i hope it does the same to you too honey.
Thinking of you Stephanie, blondie, M360 , Patty and everyone else i might have missed. Gentle hugs, love and healing lights.
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