A place to talk death and dying issues
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Brenda... Stephanie... your words today bring to mind a watershed moment in my history with this disease.
I was young and I was in shock. The diagnosis was new. My children and husband were so afraid, and I found I had lost my cherished role as their nurturer and comforter, because I was suddenly the fount of all their sorrows and fears. I was wearing a brave and hopeful face for everyone, but inside I was beginning to drown. Carrying the weight of the world on my already so sick chest.
I went to see my Chinese Medicine doctor, a man of deep wisdom. He tapped a few dozen acupuncture needles into my body while quietly observing my pulse, my skin, my breathing, my eyes. Before he left me to rest with the needles for a while, he turned on some meditative oriental music and turned off the lights. Then he stood silhouetted by the light in the hallway and quietly said:
"The cancer will do what the cancer will do. The doctors will do what the doctors will do. God will do what God will do. All that is left for you to do is mind your happiness."
"Your mind is above your breasts."
And he closed the door, leaving me to meditate in the dark. His wise words have lifted cares off my spirit time and again for almost a decade now. Maybe they will help others, too.
All that is left for you to do is mind your happiness.
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Thank you, dear Lulubee!
Thank you, dear Rosevalley!
Thank you, dear Brenda!
Thank you to all who participate by listening and silent caring!
Here are two images from my dear friend, Joan, the butterfly whisperer –
Minding happiness, Stephanie
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Thank you Lulubee! Thank you for all you wise women posting here!
mind your happiness.
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- tu to all of un,dd said come on she dornt care n doent want me ina nursing home
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Blondie, I'm reading your post and sensing that your daughter wants you to come and be with her. So thankful for your caring spirit. All you want is to be with family and it looks like your dd wants the same for you. I know you are a happy mama tonight! Love, Glenn
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Brenda, thank you again for bringing a dose of healing medicine!
My preparations for dying have always included "letting go". Because of cancer and pre-existing illness, I was forced to let go of so much - often before I felt ready. Among the most difficult to release were my career at age 39 and my primary relationship at age 50. I'd invested so much for so long in each and, poof, they were gone...because my body couldn't continue.
This morning I woke from a dream of being at a Stephen and Ondrea Levine retreat in New Mexico. You were there and many others from this thread. I felt such joy in being together. As we readied for the morning's meditation, I looked for my luggage, which someone had tucked under a curtained altar.
Then, looking outside the window above the altar, I saw the miracle of a warm water lake, a gulf really. I let go of my luggage and out came to join the naked women swimming with dolphins. Well, really we were weightlessly dancing together in water and air. And, we could all breathe in both elements.
I woke with such gratitude and joy - minding my happiness, minding our happiness, minding the miracles of dreams and synchronicity.
Brenda, I know you'll "get" this dream. And want you to know, I look forward to swimming with you - in the healing desert waters.
Healing wishes, healing waters for all!
So much loving kindness, Stephanie
You do not need to know precisely what is happening, or exactly where it is all going. What you need is to recognize the possibilities and challenges offered by the present moment, and to embrace them with courage, faith, and hope.
THOMAS MERTON
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You are an amazing woman. I brush everyday and floss, but not if I'm to tired and just want to go to bed. I only recently got my terminal diagnosis about 2 weeks ago, and are thinking, Dentist? why do I need to go see him again. Death does have it's advantages.
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Hi I'm new here. I'm 49 years old with an 11 year old son with severe, non-verbal autism. His disorder is very difficult for me, emotionally. I was first diagnosed in 2013. I told my husband, calmly," that's OK, I want to die anyway. Its my get out of autism jail free card" NO one accepted that, especially my wonderful husband. I guess it was stage 1. Forced to have a double mastectomy- honestly felt great not having to carry all that extra weight around. Found out recently, it's back and now stage 4-spread to my bones. It was recommended I take tomoxafin after my first diagnosis. I did, for under 2 weeks, because it made me feel severely suicidal. Better to die from cancer than suicide. Now I'm actually dying from that cancer. Doctor tells me to take another estrogen suppressor, Femara, to extend my life. Day three on that, bawling uncontrollably and wondering what bridge would be the best to jump off of that would cause the quickest death. Stopped taking it immediately and called the doctor. Waiting for her to call back. I know she'll make a switch to another estrogen suppressor, which will probably do the same thing. I just can't take things that mess with my hormones. I've always had severe PMS and was never able to take the birth control pill because it made me feel too depressed. I take Zoloft to help my depression, and it works. But I still have this feeling that death is gonna be great! Bring it on! Death is better than life. Very few people, I can talk to, because most people don't think it's OK to tell cancer, "I give up, you win", then just lay down your guns and die.....but that's exactly what I want to do....and I want to hear someone say, "That's a perfectly fine way to feel!"
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Dear ASDmom,
We are so sorry for all that you are going through. We wonder if you have discussed your depression with your oncologist and perhaps enlisted the support of a mental health specialist, or counselor in addition to your Zoloft. Some cancer programs enlist the services of a psychiatrist who can also help sort through the impact of hormonal therapies with antidepressants. While you are not necessarily asking for help in sorting out the medications there is a topic in the stage 4 forum that is devoted to Hormonal Therapies where you might find others who have dealt with depression and the issues associated with depression and hormonal treatments.
For anyone who is having thoughts of suicide we urge you to contact a counselor, family member, friend, or emergency services, emergency room of a hospital. Or in the USA, call:1-800-SUICIDE 1-800-273-TALK; 1-800-784-2433 1-800-273-8255.
Perhaps others will offer some ideas.
The MOds
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ASDmom- I hear your frustration. It's a very hard road having a child with severe autism. I will tell you a story that my Nursing instructor told me about a mom who tried to commit suicide. She had kids with severe issues and couldn't cope any more. My instructor said she should give the kids up to the foster care services in order to save her life. I protested that they were her kids and how could you do that? She said "what good is the current situation when it is so bad she wants to die?" This mom was in danger of losing her job because of the kids behaviors and needs and under extreme stress. She can advocate better for them from outside, my instructor said being very objective. I didn't understand why my instructor said that until I had kids of my own.
My oldest is mentally retarded, autistic and deaf with other health issues. She was hell when she was little and we made it through and she turned out to be a great kid, reads and writes at a 3rd grade level and is now working in a sheltered job. We were lucky as she is higher functioning. It's just luck that things turned out. She lives in a group home now. We placed her there after my cancer returned full blast and it looked hopeless. She loves her group home and the folks are great. There are children homes available as well. I used to work with a woman whose son was severely autistic and she would come to work tired exhausted and bruised from pinches and bites he dished out. Her arms had circle bruises where he would bite her. I also went to a support group for special needs kids parents and severe autism with retardation is especially hard and exhausting. I watched the moms with autistic kids bawl and sob over their nonstop kids terrorizing their other kids, flooding the house, stuffing the plumbing, smashing objects, racing into the street. They spent all day in hysterics over damage control. I feel for you. My heart aches because you never get a break. You can't just go to a coffee shop and visit with someone and take your kid and hope they behave. I couldn't when my kid was little. It's a very lonely isolating life and exhausting. Your only time alone is when they sleep. No one knows what this is like unless they live it. That's a fact.
If life is so stressful that you want to die to relieve yourself, then you need place your child in a home where they can get the care they need. You can get a break. Your husband can keep his job. If you die then the child will have to be placed anyway since there is no daycare for retarded autistic kids at prices folks can afford. I know I looked everywhere and no one wanted a deaf, retarded autistic kid at any price. We did tag team parenting. My DH worked M-F and I worked swing Fri-Sun. We never saw each other and only had days off when they hit during the week. We never had a weekend alone for 14 years until my daughter went to a special camp. The stress of a severely retarded child is spectacular and people don't appreciate what it can do to a person, their health and their marriage. How we managed to stay married for 27 years is amazing. Life is a roller coaster. But I have been there and there is NO SHAME that you can't cope and death looks sweet and a release from the jail of autism. I get it. You need to talk to a counselor and look at placement issues for your son. It's a health crisis and there are options. Also hormonals made me very depressed, especially arimidex. Aromasin was not as bad. You are not alone! You are a strong Mother of a son with serious special needs. I hope you get the help you need.
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I agree with Rosevalley. My cousin had a child at 16 who turned out to be autistic. She tried, oh my goodness she tried to be a good mother to him but the boy didn't care! He hit her, bit her, destroyed her home and didn't even know who she was. Out of desperation - I have no idea how low she went (suicidal thoughts?) - she finally put him in a home. He LOVED it!!! He had friends and structure and boundaries and he was safe and so was she! They had told her as he grew the destruction would get worse as well as the physical abuse to her. She visited him at first, but he didn't even react when she went so she was finally able to let go. She did it for HIM at the beginning, but we all knew it benefited her tremendously and we were happy for her. She is now a grandmother with a wonderful daughter and though she has never forgotten her first-born she is at peace with her decision so many years ago.
I pray, ASDMom, that you, too, can find peace that keeps you alive.......God Bless, my friend.
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ADSmom- I hope you find the courage to post again. I also hope I wasn't too forward. As a parent of a special needs daughter I can tell you that there are some fine group homes out there. My daughter is happy and we go visit. We take her out and she comes over for weekends. She loves it. It's been a real blessing to see her happy and safe. I wish the same for you and your son. Once some of the stress is relieved then you will want to participate in life more. People can live with bone mets for years and years. You need not think like life is over. Blessings and fortitude to you and your family.
Lovingkindess and peace to all those struggling with hospice Hope, Nancy, M360, Blondie and Stephanie. Blondie I hope you get the situation that you want.
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Does anyone have any news of M360?
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Very long, oops!
Hi ASDMom,
I've been praying about how to respond to your heart-rending letter to us all.
If you've been reading this topic for a while, you'll know that I'm at an ebb for meeting other people's hard news. My old forces allowed me to do crisis counseling, talk people off edges, strengthen parents of children with my often life-threatening genetic disorder, comfort the bereaved and generally be a supportive, engaged human being.
Now though, I am not that person anymore.
I am not that person anymore.
I can't handle what I used to handle.
Not only can I not take care OF others, I can't even care FOR them. I still care ABOUT others, but what a difference a preposition can make!
ASDMom, I wonder if we're actually in very similar situations - though I am not partnered and chose never to have children (genetic disorder, supposed to die young, didn't want to pass it on).
Maybe your metastatic cancer diagnosis and response to the first treatments you've tried has made you "not that person anymore."
Rosevalley and Barbe suggested that whatever the course, outcome and timing of your mets diagnosis (death sooner, death later), your son needs to be cared FOR, but perhaps not taken care OF by you.
Like me, you may need to let go of old identities that no longer work for you or for those who rely on you.
ASDMom, I hear your humor, I hear your distress, I hear you thinking that death (from cancer or self-induced) is a way out. There are other ways out.
And, as a long term witness in the cancer world, I don't think life-death is an on-off switch. With bone mets only, you may have years of life left in you. We don't know what the future holds and we mustn't give into the illusion that death is a way out of life. We continue to live in those who survive us. The decisions we make and what we do continue to affect them...perhaps for generations. Perhaps forever.
Grief, sadness, loss and forgiveness are sure to follow in the wake of letting go of prior identities.
Yet, I always find that something rises to lift me up again.
Your sense of humor, your reaching out for support, your willingness to consider your options are all rising to lift you up again.
ASDMom, I pray your oncologist has more treatment tips up her sleeve. You may want to try Xeloda, since the anti-hormonal drugs have been so tough on you. Many oncologists give the daily pill at reduced dosages to their fragile patients.
And, I encourage you to reach out for professional help too.
Just think, each of us is a precious gift from the universe. Our very existence is unique, unlikely and not to be wasted. Learning to accept help is part of my inner process too, as I'm so often the one who offers it.
I'm going out with a friend for some fun this morning.
Lulubee, minding my happiness.
Much love for everyone reading...I hope this is helpful for you too, Stephanie
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Lulubee- what a helpful reminder you have given us to "mind our happiness." Many times we forget to mind it or be "mindful" of our happiness. There is no person more deserving of happiness then ourselves. Once we mind that, then we can pass it on or exude our happiness sending rays of sun shine out.
Special loving energies to those on hospice- M360, Hope, Nancy, Blondie and Stephanie. Thinking of you all and sending lovingkindess and happy energies your way. It stopped raining and that alone makes me feel better!
love rosevalley.
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Hello everyone. I noticed that yesterday Stephanie posted that she had a rough day and night. So I hope that folks reading here will prayer list her and join the circle of love and support here. We are thinking of you Stehanie (Longtermsurvivor) and hope things are better today. She has an awesome hospice team and feels supported. I hope they can control symptoms better so she is more comfortable.
Prayers and Lovingkindess to Hope, Nancy, Blondie and all others on hospice. love rosevalley
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Thank you, dear Rosevalley, for bringing me into the circle of love and support. I gratefully receive all healing thoughts, good wishes, prayers and, even, good vibrations.
Or, as I sometimes say, thanks for doing that thing you do, wherever you place your faith.Yesterday got a little worse before it got a little better.
Seems like I'm sleeping all the time now. Not so, but I can sleep 11 hours at night and take 3 or 4 naps during the day, so I'm often sleeping 12-14 of 24 hours.
Fortunately, I can still eat, drink and poop. And pain, well, it's pain. Fortunately, I've learned from pain throughout my life and this feels like more lessons in the school of hard knocks.
OW!
Yesterday, I saw the osteopath who helps release the pain and weight of my bulgy liver, so I can continue to eat, drink and poop. And to sleep. After opening my belly and diaphragm, I asked for help with my neck, well, the top of my neck, well, the bottom of my skull.
He did a little this and that, then started to walk away. I called him back and put his hand, "Here". He pulled back. Gently touched the area, then said he couldn't work on it, because he's worried that it's a skull met. That I need to see my oncologist, get an x-ray or ultrasound, get it diagnosed before he can work on it. He was really frightened for me.
This is a fellow I've seen for five years. He's never been frightened by anything that's happened in my body - pleural mets, abdominal mets, liver mets, lymph node mets, multitudes of attendant problems. He just reassures me and lifts it to the next higher spiritual level.
To witness his fear and feel him leave the room quickly was like a door closed on me and I felt really alone for a moment.
Fortunately, I've been held by angelic presences for many months and they assured me that I will be alright, no matter what happens with my body.
I am so grateful for the confidence to continue with this unfolding process.
My dreams were beautiful and reassuring. The sky is rain clouds and sunshine. There's a fire in the wood stove and fresh, luscious, strawberries in the refrigerator.
Feeling loving care online adds to my circle (sphere) of love and support.
Next Tuesday, I've an appointment with my oncologist and will bring up the lump for discussion. I do think if she thinks it might be a skull met, that I might go off hospice to have it imaged. That with the intent that I might use radiation to reduce pain, rather than increase the morphine. I don't need to know now though.
Well, that's my sunny-cloudy report on dying today.
Hope it's not to distressing for anyone reading.
blessings and gratitude for all, Stephanie
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((((((((( Stephanie )))))))))))
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This has been in my mind since yesterday.
A Japanese novel. A man in his 30s suddenly was informed that there was an accident a while, might well be a few years or a couple of years, ago. For some reasons that I do not recall his brain got re-wired in a mystic lab then and one place was reconnected by a mistake. Because of this mistake, now he was told that he needed to prepare to leave this world in a couple days. He somehow remained calm. He met his seemingly only friend, his boss' daughter (his boss was the leading scientist and the director of that mystic lab where he worked), and told her the news. The girl indicated that she would freeze his body after he died in case he would be able to come back. Then he walked around the large city, taking care of all sorts of stuff. Finally he went home, cooked some Italian dish for himself and ate it. It was dusk. He went out again, sitting somewhere in the city, watching life going on. The next thing he noticed is a strange place he had never been to. It was a very quiet town, surrounded by high walls. There was a river outside the walls. He had no idea where this river flowed to. Every morning, a horn would be blown slowly like the church bells. A large herd of unrecognizable large animals covered with long golden fur would go out of the town through the gate and come back in the evening when the horn blew again. During the day, he could see some silent people moving around doing or not doing things. He somehow was assigned to assist a woman librarian. They gradually became friends. He also noticed that no one, people or animals, houses or trees, has shadow. He started to miss his own shadow. Time passed, day by day, month by month, year by year. Every morning, a horn would blow, a large herd of unrecognizable large animals with long golden fur would pass the streets and go out of the town through the gate. He would go to the library to work. He would go back to his place in the evening. The horn then would blow again, calling the golden furred animals to come back. Time passed ... One day, his lost shadow appeared, not as part of him following him around but a separate object like one of his friends. He was happy to see his shadow again, although in a strange way. His shadow told him that the river outside the town walls could bring him back to the world he left. What he needed to do was to immerse himself together with his shadow into the river. His shadow gave him a certain time to consider and told him this was his only and last chance to return. He thought and thought. In the end, he did not immerse himself into the river that could bring him back to the world. His shadow left him for good. After all, he chose to remain in his own mind that took a form of a walled town with a large herd of golden animals going out every morning ...
Why?
What a fantastic imagination of the unknown dimensions beyond this physical world!
When I finished reading this Japanese novel years ago, for a moment, no, for days, maybe even now, I thought it was real and possible...
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Thanks for asking how I'm doing Stephanie! I am going through bone scan, brain MRI and CT (chest/abd/pelvis) and tumor markers. this week, and then will receive the results next Monday. I'll be sure to log back on and update you all. If it looks like the Liposomal Doxirubicin is no longer working (I've been on it 8 months) then we will have to switch to a different chemo. But not until June!
I have claimed May as "My May!" My son is graduating high school on May 12, we have a huge party planned on May 14, and then he and I leave for a two week camping "Mother-Son" road trip from NM, to AZ, to CA coast. We rented a Ford Mustang convertible! We will spend 5 days in San Francisco exploring. Please pray I can still camp on the ground with my trusty REI mat, and that I can walk those hilly San Fran streets. Have Been living for this graduation for three years!!
I started Fentanyl patches for pain to go with the Morphine IR and ER, and have found good results. But I still am tired and in pain.
Enjoy reading all of your posts and especially love the poetry. Will update you on Monday.
Love, Shelley
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My husband, Jim, SD Gwyneth, Son Eli, SS Parker.
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Beautiful family picture! Love the smiles.
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Hi Shelley,
Thanks so much for your update.
I do wonder and worry when members disappear and will remember that you are on the road trip of a lifetime come May!
How wonderful for your son and you, it sounds like a great trip and to some of my favorite places on earth.
Bring good walking shoes, walking sandals, and plenty of sun protection. That trusty mat sounds good too. San Francisco isn't really camping territory, but what a city! I'm prejudiced, having been born there. Still, it's a sublime place and the food is amazing!
Shelley, you'll be coming at a good time. May hit some fog and wind, but not summer's cold. As Mark Twain said, "the coldest winter I ever spent was a summer in San Francisco."
Smiling just thinking of you on your journey.
Warmest healing wishes and loving kindness, Shelley,
Stephanie
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Shelley- What a beautiful family you have! I hope your trip is fantastic and you and your son really enjoy yourself. San Francisco is so much fun. And Stephanie (above post) is right you will miss the cold pulled in from the central valley heat. SF can be cool and cloudy in the summer. When we were first married 1989 we lived in Oakland. We loved to explore San Francisco and surrounding areas. There is so much to see. I am glad you have a plan to control pain and keep yourself comfortable. Maybe a blow up mattress to protect your joints? It will be a trip of a lifetime and you both will enjoy it. I am happy for you and hope you will share the trip when you return. Best to you both.
Stephanie good to see you post. Lovingkindness and healing energies to our sisters on hospice- Hope, Nancy, Blondie, M360 and Stephanie. Hugs to you all.
rosevalley
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JHarris,
Wondering how your Disney holiday went...any memories to share with us?
You've been in my loving, healing thoughts as you undertake this journey with your family.
Your fan, Stephanie
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Stephanie, sending you a gentle embrace along with a reminder that you are in my thoughts daily. I am sorry to read of your difficult moment with the osteopath and hope that your upcoming visit with your beloved oncologist serves to reassure you.
With a very gentle hug.
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All I am able to give right now, I give to you:
"Believe in the possible, but base it on the truth of the moment....Remember that everything changes....Practice kindness....Connect to what is dear to you....Soften into the moment....Go bigger, look out, let be, and let in love." (Elena Rosenbaum)
In lovingkindness...
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Dear Stephanie- Holding you in the light and warming you with energy for those things that mater most to you. May your team support you and your heart guide you. Gentle hugs. Lots of love your way.
rosevalley
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Stephanie and all,
Sorry it took me so long to post after our vacation. I've been recuperating from that & having chemo the day after we returned. Sitting in my special recliner right now watching turkey and deer grazing in a field behind our house. They come to see me almost daily now I believe because they know how much comfort they provide.
The trip did provide cherished memories the best of which was unexpected. I rented a scooter for mobility. My grandson is six & his legs got very tired so he rode on my lap! We had the most amazing time conversing (the bruises on my legs are a minor price to pay for this joy) He is a smart kid. I think my daughter has understandably shielded him from the specifics of my condition but boy did he have questions and opinions! He didn't want medical explanations, just little boy concerns! He asked if I was happy to which I replied I can't remember the last time I was happier than I was right then with him on my lap. The questions ranged from my hair, to what ride I "could do" focusing on the positive rather than negative. I pushed myself and got on a water ride (DH helped), sat next to GS & will never forget the look of joy on his face! My favorite question was whether I would ever be able to run again. I hesitated and he didn't wait for me to answer. He said "grandma, I've seen you run in my dreams so I know it will happen"!
I am extremely grateful I made this trip but it wasn't without its trials. After that day at Disney it was more than obvious I had overdone it. Took 3 days off & sent them on their merry way with a smile hiding extreme pain. My doctor sent me with an array of pain medication but nothing really relieved it completely so sleep was an issue. I'm a reader so I spent nights submerged in books to escape the thoughts of - this is bad, haven't felt this before, should I be in the hospital.....probably no need to explain as I'm sure you've all been there before. I decided to stick it out the rest of the week knowing there probably not much that could be done. It wasn't for naught since we met for dinner each evening and I got to hear the wonderful magical stories that only a child can tell about his day. DH and I sat by a pool a bit during the day and took serene scooter walks around Lake Cay enjoying the wildlife. I tried to get him to accompany them to the parks but he isn't a Disney guy & truly we love being together so that was that.
The doctor has scheduled both bone & heart scans. I'm not one to worry too much about those - it is what it is. Acceptance is the key for me. I try to do my best to deal with issues on a day to day basis. Sometimes it is easy...other times I cry healing tears and wait to see what changes praying for a positive attitude.
I've been thinking of you all with love and sisterhood praying that you have some measure of serenity and pain freedom. I'm exhausted right now but feel accomplished that I finished this post. It means a lot to me to keep in touch and keep up with all of your trials and wisdom. Juli
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Oh Juli, thank you for updating us about your trip. I felt like I was there with you - feeling your grandson's love and enthusiasm, your husband's companionship, your own self caregiving and willingness to be in joy.
Acceptance is the key for me too and yes, all those feelings that flow through included.
Juli, you are truly one of my heroines here and I'm grateful that you took the risk to do what mattered to your family and you...and that you shared it with us.
Sending a warm, healing hug, Stephanie
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