A place to talk death and dying issues
Comments
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Calico, first: you are not Debbie Downer! We all understand the importance of venting, and this place is where you should feel free to do so. I hate to hear that you are struggling with your hands following treatment with Doxil. I must say, I've found throughout my almost 20 year history of breast cancer treatment that side effects have been routinely minimized by many of my MO's, not only in advance of treatment when education was provided, but also during treatment when I was struggling, and then following treatment as I continued to deal with long term side effects. Interestingly, I just read an interview with Dr. Susan Love about the "collateral damage" of breast cancer treatment and how she started a crowdsourcing project in order to hear from women themselves about the problems they experienced with breast cancer treatment. I just started a topic on this forum about the interview and how women can get involved, in case you are interested: https://community.breastcancer.org/forum/8/topic/829170?page=1#idx_1
Please remember that I and so many others are thinking of you and hoping for some relief as well as some realistic, practical information from your MO. Keep us updated!
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Calico so sorry u r not debbie downer
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Thanks, 208Sandy, appreciate your advice and support. I did see a press release about palbociclib some time ago, but didn't connect it with Ibrance. I will ask the onc about it.
And thank you both, Brendtrue and Blondie, for your advice and support, too. Brendatrue, I will definitely look into the Dr. Susan Love poll. Some of these side effects are just over-the-top. Speaking of which, I just posted on the chemo thread about my armpits turning dark! So attractive! What the heck?????
xoxoxoxoxoxo
Calico
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Calico,
This is the place to vent, I know I'm always here to listen. I too was on Doxil and my hands and blisters were so horrible, I wore gloves and use Silverdene cream for burn victims. However with all the care I took I got infections and Cellulitus. You need to really take care of yourself. I'm here and understand too Doxil for six month and had nothing but progression throughout along with elevated cancer markers.
Thanks for the heads up on Ibrance, I read that it also can be taken along with Abraxane. I'm going to print out and discuss this with my Onc. I found the thread for all new trials and printed them out then highlighting the ones that I think might help and will ask my Onc what she thinks.
I don't know if any of you ladies have heard the Song "Tomorrow Will Be Kinder" by the Silent Sisters. I heard it for the first time today and I went to youtube and listened and watched the lyrics. So fitting for so many of us.
So I say to you I hope "Tomorrow Will Be Kinder.
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Thank you, M360, when I went through a lesser version of this hand thing with Xeloda, the onc's nurse practitioner prescribed the generic version of Silvadene. The instructions say to keep a layer of it on the area "at all times". I can't figure out how to do that when the area is the palm side of the hands. I have worn gloves some, but heat brings the Doxil to the area, so I'm in a dilemma. The latest thing I've been prescribed is Triamcinolone Acetonide ointment which has the consistency of Vaseline. I will say that it doesn't seem to stain clothes like I thought it would.
In looking up Silvadene, I see it is anti-bacterial, while the Triamcinolone is not. I can easily see how infections would develop with this hand condition, so Silvadene does seem like a better choice.
You take care and hope you are able to hatch a new approach with your onc and iBrance!
xoxoxoxoxox
Calico
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I have passed through a really bad time, and things are looking up a bit. I will be having nutrition by IV at home until things turn around. Last week I had honestly given up. I feel I can hold my own a while longer
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Wilsie- (((((Hugs)))))) I m glad you are feeling a bit better and sorry that you have had to endure so much. Sending you healing thoughts and wellness.
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Good to hear from you Wilsie and glad you can get your IV at home. Sending good thoughts and a huge hug.
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Hugs and prayers flying out to you, Wilsie, so sorry you've had such a hard time!
xoxoxoxo
Calico
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wilsie
Sending love and hugs for healing. ️Hang in my dear.
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Hi, I saw the onc today and gave him a copy of my advance directive.
Are you all familiar with the POLST (Physician's Orders for Life Sustaining Treatment)? It's on bright pink paper. Maybe it's just a California thing. Anyway, he signed off on that, so no one has any excuse for trying to bring me back to life if I'm gone.
xoxoxoxox
Calico
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Calico, I hope that you feel secure, powerful, and in charge. And at peace. May I be as graceful as you when my day comes.
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Living with the Body (Joyce Sutphen)
Body is something you need in order to stay
on this planet and you only get one.And no matter which one you get, it will not
be satisfactory. It willnot be beautiful enough, it will
not be fast enough, it will
not keep on for days at a time, but will pull you down into a sleepy swamp
and demand apples and coffee and chocolate cake.
Body is a thing you have to carry
from one day into the next.Always the same eyebrows over the same eyes in the same
skin when you look in the mirror,and the
same creaky knee when you get up from the floor and the same wrist under the watchband.
The changes you can make are small and
costly—better to leave it as it is.Body is a thing that you have to
leave
eventually. You know that because you have seen others do it, others who were once like you,
living inside their pile of bones and
flesh, smiling at you, loving you,
leaning in the doorway, talking to you
for hoursand then one day they
are gone. No forwarding address.0 -
Lovely Poem! Yes a body is a much loved vehicle, a canoe, a rickshaw... we travel together and then part our ways. Happy for the time we got to spend together. Thank you Brendatrue.
Calico- yes I am familiar with POLST, good thing to have as we near the end. Advanced Directive too. I hope they bring you a measure of peace and control.
That much I have. Monday we met with a Lawyer on Durable Power of Attourney for DH, Advanced Directives for Healthcare written by same Atty. We discussed a will. We really really like this guy, very professional and upfront with prices, legal requirements pros/cons and he was so helpful with Guardianship for special needs DD. He's got us covered.
Then I met with a doctor about getting the paperwork for Death with Dignity script. It's Legal in Oregon and I like the control and peace it provides. He also suggested hospice as a joint effort. I am not so sure about that. He described the entire thing and shared paperwork. I had already been to the website and opened the forms and read folks descriptions. It seems a much more humane ending that the patient decides when enough is enough. The doctor was very up on all of it, clearly an advocate of patients being educated and making these decisions themselves. He said the Brittney Maynard story has opened many folks eyes and minds to the possibility of using the law when faced with terminal illnesses. He said just last week he had 3 consults. I am not surprised.
Just about everyone I know has had a relative who has faced a terminal illness with an uncertain miserable ending and had no choice really except to power through it. Having watched my Grandmother die slowly 3 years with widespread IBC mets bone, organs, liver brain..etc. the pain and end spiral was very hard on us and her! Then there was no hospice. My Dad had hospice and it was MUCH kinder and gentler passing. Still I am a very private person and really do not desire people hovering around me asking "what else do you need, want.. spiritual blah blah..." I find that intrusive and irritating and not necessary. Hospice by design is required to ask you all of these things. Its my journey and ending and I need not explain myself. I don't even want my family present.. born alone - die alone. Besides I think you need to prepare a mind set for leaving, no fear, acceptance and then gently parting. Death and dying is important, careful consideration is required. Why else would we have been given all this time if not to prepare ourselves well as we are able. To be able to receive death with love and acceptance, as we received and embraced life at birth is our life work.
The not having family present might be unsettling to others, but most of my journey has been extended by pressure from my kids and DH wanting me to extend and "try" everything. The unending game playing and BS in Cancerland that I am forced to endure while taking these "treatments' and poisons makes me mentally miserable, endless angry and resentful and anything but living a happy life. Besides as we have all experienced, every new treatment fails and you end up exactly where you were to start with... over and over and over again. I see the pattern here. I do not want to see the tearful eyes of my 3 kids and take leave of this life with regrets that I let them down. They will be fine, they are stronger and better able then they believe themselves to be. Boundaries need to be set. They are loved and will be loved by others.
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Hi, Rosevalley, it is a relief to have all the paperwork, and as importantly if not more so, the people involved prepared. I don't have children to put me in a dilemma, or a husband who has other ideas for me. I am very grateful for that. That must be so hard.
I, too, do not want a cast of thousands at my bedside. There was a party atmosphere in my brother's room as he was trying to leave the planet. I was horrified, but could do nothing. My husband has firm orders that only my spiritual advisor, or a Zen priest, can be with me. I'm not at all sure I even want my husband there. Right now, it feels like it would just make it harder on me. Why do that to myself?
Glad you have thought through and are looking out for your own best interests, and you are right. It may take some time, but everyone else will be fine.
xoxoxoxox
Calico
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Brendatrue, I have felt the exact same way as expressed in the poem - like I'm leaving and have no forwarding address. The other metaphor in my mind is of getting on a ship, heading out to sea, and everyone and everything I loved in my life standing on the shore and waving as I silently slip away into an unknown future.
I had a phone consult today with a psychiatrist I've been with for years, and told him I wasn't sure how to relate to people who weren't in my position, and relate to the world and the mundane of the day. I've rarely stumped him, but this time, he said, "I can't help you with that." I've thought about it and realize that I've pretty much exhausted what allopathic treatment has to offer me, in terms of both physical and mental treatment, and have crossed into the place where I have to look for comfort and answers in the spiritual.
xoxoxoxo
Calico
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Calico - try white, cotton gloves. You can find them at Sally's Beauty or Bed Bath & Beyond.
Wilsie - so glad things are looking up for you - you've been through so much. Hopefully, the nutrition will help to make you feel stronger - we really need nutrition at a time it's often difficult to tolerate!
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Wilsie - glad tot hear things are improving
Brendatrue - thank you for sharing. The poem says everything for me
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Wilsie glad to hear of improvement
Great poem
Rose agree with u
Calico u stumped a professional how cool is that.
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Good evening Ladies, while we may not be leaving a physical forwarding address, we will always be in the hearts of the people that love us. They will see us where they feel us. Cancer took my best friend ever 14 years ago, but every time I see a yellow tulip I see JoAnn. Every time I tie a bow, I remember how she taught me to make big beautiful bows. When I make a beautiful bridal bouquet for a new bride, I remember all of the weddings that we made bouquets and decorated halls for. And I remember the first Christmas that I was alone without her. But I wasn't really without her, 14 years later and I still see her, and I know she will meet me again one day. Just not today.
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beach bum, that was beautiful. Thanks for sharing!!
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Yes, Beachbum, thank you for telling us about your experience with loss. We will live on in a thousand different ways, just as lost love ones live on in us. Thank you for awakening me to this.
xoxoxoxox
Calico
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I think it is hard for us to imagine/comprehend life with out being a part of it, isn't that the scary part of death/dying? That is what I feared most with dying and leaving my boys... but I continue to focus on who they are and know that they will be okay. They will have good memories of their mom, and they will remember me.
I was focusing writing a letters to them,,, but then i kinda dropped it. Because I read a few times that kids don't really want that...I am going to talk about them, not me.
Oh, and I follow this FB group called death cafe, lets you talk about dying.
here are some essays on dying,
http://www.vox.com/2015/3/6/8156221/best-essays-death-dying
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I truly believe that we live on just changed. Not in a heaven/ hell opposite sort of way, but ever present. There is this funny little way my biological daughter twists her lip when she might cry and it reminds me so much of my Maternal Grandmother , that it stuns me. I just stop in my tracks and see Helen, then my DD. The two don't look anything alike, as my DD looks exactly like her Dad. My Grandmother died when my DD was a toddler. There are so many ways we are interrelated and it won't ever stop. There are sights, smells, flowers and things that just bring back memories of people I have loved in my life. They are with me and know that. I tell my kids that I will always be with them and they just look like at me - there goes another one of Mom's off the wall Buddhist ideas... sigh. Oh we might have had a normal Mom but nooooo... she sees ancestors in trees and flowers and clouds. Surely there is an ICD9 code and drugs to treat that, besides the cancer...hahaha Life is tough!
I had to laugh today at my unending good luck! Here we live in one of 3 states in the entire country with Death with Dignity laws allowing a compassionate ending with overdosed sleeping pills, for terminal patients with 6 months less to live. We have insurance through the state, and the state of Oregon gave the contract for state workers to a Catholic Insurance Company called Providence. SO while I have the right to die with dignity, they have the right to refuse to pay for it! The drug used, seconal, is caught in an drug battle because the company that manufactures it will not allow it to be used for killing prisoners on death row. They moved manufacturing out of the US and jacked up the price to 3,000.00! No way around it. Now if I had Medicaid or Medicare or BCBS they would pay for it. It is beyond my brain to understand how a State could give a contract to an insurance company that refuses to fund a state law passed by the voters to aide terminal patients. Is that irony or what? They will pay 10,000 a month for afinitor which I hate, or zillions to keep me zonked and humming along on a vent, but not 3k to die peacefully. I resent their religious beliefs, now monetarily block my access to a legal medical option. That is WRONG.
Honestly... some things are so "F-ed" it just leaves me speechless..
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court? ACLU? Are you in a state union?.............. Not likely Obamacare would allow something like this. How about calling senators and representatives. This Providence with full knowledge of the law in Oregon, agreed to provide the insurance management. Can't be that stupid. So, something is fishy. Problem it'd take Sherlock to find the backstory. Has anyone other state employee been turned down. ?0 -
Any problem with me irritating some folks?
Do you still have an Oregon nursing license? Forget the nursing license. I was looking for a backdoor, it didn't work. GWAD LAWS ARE BORING TO READ.
On the Oregon Health Authority Web page It list about 7 health plans. How did you get saddled with Providence? Is OHA the administrator of the state employee plan? Did I get that right?
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No I gave up my license when our paperwork for our last adoption went through and my DD was legally in the States. Then exactly one year later after 8 mammograms, got to be a stay at home mom - got stage lllA Breast Cancer. Not the kind of "retirement" I had in mind. Oh well water under the bridge. I am not dying anytime soon.. I don't think anyway. I will send in the rest of the paperwork, but tell them to hold the script until ready.
Then I plan a wee little campaign....of WTH? What is the point of a State Law if insurance companies can refuse on religious grounds? We paid for our health insurance and I want access to it. Imagine if you had a bunch of kids and decided ok, enough. You go in and want a tubal. You can't have one.. because some one decided no, more kids for you! They stopped a lot of that, you can get birthcontrol pills and tubals. The State should be required to give us access to a STATE VOTED LAW! I should be able to decide what option I want in dying - hospice or DWD - not Providence. I am flabbergasted that the State allowed this to happen to it's State Workers and their families. Maybe I can be a vehicle for change. I've been a PIA before, and the ending is exactly the same either way, so not like I will be out something. I might be able to make a difference for some folks. Maybe we can start a fund for DWD $ to aide those who have no insurance, because at 3k a dose it is an road block to using the law as intended.
None of this would have happened if these drugs were not targeted by States wanting to use them for putting prisoners to death. I read this article all about it and really had no idea they could even be connected in any way. Funny I am against capitol punishment. Not cost effective, you can be wrong and kill the wrong person, it gives no chance at redemption or paying back to the victims- so I am against it. Besides why they don't just use the same drugs they use in animals for euthanasia is beyond me. If they can humanely kill a suffering horse, they can kill a person. That last botched execution in the Midwest, where the man took over an hour or more... then they want to bring back a firing squad? How Medieval!!! Just stop executions and the insanity around it. Then these drugs will go back down in price to where they can be used for compassionate uses.
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Rose, I added more to my post.
The state whistleblower law ..... I read it for nurses. It defines all kinds of scenarios, but not this.
If you don't mind all the publicity
It's one phone call to the same reporter that got all the coverage for the gal that had a brain tumor. Yes, you will change the world, but it will be noisy and intrusive.
Save me time tonight. The law defines seconal as the drug. No substitution?
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Providence signed a contract with the state. That should be covered by sunshine law ....I.e.open record....public should have access. Problem is it may not be available on line.
Generally a state contract will say that the second party must follow the applicable statutes by identifying chapter and number.
Did you start the appeal process?
If the state of Oregon is subject to it's own laws, Then you should be able to work this through reasonably. If the state government is not subject to it's own laws, then it will get sticky. Gawd girl this is going to be a donneybrook. You'll be all over state,national world news(little bits of the world).
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Rosie, do you want help shaking the rafters, or a you good to go alone on this? Your state Oregon Health Authority has an Ombudsman.
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