A place to talk death and dying issues
Comments
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I will test waters and see what options are available to me - myself. Sometimes there are ways around things. Luckily I have retirement $ but it makes me mad that this is a legal medical option being targeted and removed from my benefits plan, because of my Catholic Medical Insurances' objection to it purely on religious grounds. In 2015? In America???? Oy... not pleased.
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Rose, there are seven or eight insurance providers for Oregon state employees. You chose Providence for some unknown reason. Their plan probably looked best at the time. But there wasn't disclosure re: DWD. A couple (or more) thoughts. You could call the other insurance providers to see if DWD is covered. If it is, that becomes a contention point. Providence didn't disclose that they didn't. Also, the question re: reproductive issues for women--contraception and abortion. Doesn't matter beliefs re: the reproductive issues. What matters is if the others provide all three and Providence doesn't, this makes the Providence insurance not equal to the others. OHA failed as your employer to assure that all insurers had 'like plans'. The reproductive issue was just ruled on by the Federal Supreme Court. OHA can't choose not too cover the reproductive issue. Not sure how the Federal ruling affects Providence, but it would be very interesting to know. The Federal ruling was specific to employers, not insurers. A biggy--if Providence is a Medicare approved insurance subcontractor, then are they breaching Medicare rules? If they are breaching Medicare rules, they could lose their contract.
Another biggy--If none of the plans cover these three items, OHA would have to prove they aren't intentionally not providing these services that are legal within the state and at federal level. This opens up a whole separate can of worms.
From your prospective you just want the pill without grief of having to fight the system. Please, consider getting someone to work on the questions not only to satisfy your need, but other state employees.
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Sassy- there are not 7 or 8 choices. The State insurance is provided by counties. We have in Marion county 2 choices- Kaiser Permanente or Providence Choice (HMO) or PPO. We took the Providence PPO and are stuck with it for the year. Kaiser here is fractured and awful, but very good in Portland. As a matter of fact the only 5 star cardiac rated care in all of Oregon went to Kaiser Sunnyside in Portland and no where else, not even the Oregon Health and Science University the huge med center here. If you live in various parts of the state the options change. Oregon is a HUGE state, so what is available in the Southern portion is not the same in Eastern Oregon etc. It's not as open ended as you are making out, since there are only 5 million people in the entire state making for returns and pooled monies very small and hence the competition for contracts very tiny.
There was a Death with Dignity opinion article in today NY Times and I wrote my 2 cents on what it is like here from a cancer patients' perspective. So far they have not printed it. Lets see if they do. I made it short and sweet. Noisy wheel gets the grease. Awareness is half the battle.
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Rosie, sorry, asked for details. The OHA didn't define what you just did. They make it look very open ended. Thanks for defining. Sucks. OH well. Providence is going to be up to there necks in muck, now that you have gotten the word out.. Go girl, take them off at the knees.
Let us know when it get's printed.
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No problem Sassy- it's complicated. While I know the perils and pitfalls of working for a Catholic hospital and one could say why if you wanted to use DWD would you sign up with them? You big dope! Well for one I didn't know they would deny or even be able to deny access to DWD within the state plan. When we signed up I was not thinking I would use DWD, but was considering a kinder less evil treatment options .. thus my seeking outside the state counsel for a second opinion. Well there isn't much out there. So I came back SOL. (Let me clarify there are options just I wouldn't entertain the SE and misery of them)
Had we switched to Kaizer my entire family would have been forced to give up their specialists and PCPs. When in Kaiser you use their doctors and specialists in their network. We have been with our Pediatrician for 12 years - no way am I changing, she's great. My one kid has a serious chronic disease - I want everything to stay the same - same internist, Gastroenterologist etc! These relationships go back years, and Providence does do a decent job at accessing care for the rest of my family. While I very much take issue with them on blocking DWD access for me, I do not take issue with them for the rest of our medical plan because they do a very good job for the other members of our family. So far anyway!
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Today I got upset because my mother had let my great niece and nephew wreck a mask. It was a silly paper clown mask, but I worried that she had let them mess with the cat and pirate ones too. I consider them mine. I like them because I think it is amazing how good they look -- and they are just cardboard masks. The way the whole disagreement went, it made me feel like she was passing on my stuff before I'm even dead. It's stupid and immature, but it really upset me; and I haven't been able to shake the mood. I'm thinking maybe saying it here will make it go away. Seriously, I should not care about 2 masks (which incidentally I have taken excellent care of since we got them, probably in the 80s, while these kids destroy them in 5 minutes). OK. I'm waiting to feel better now.
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(((((((Dunesleeper))))))) I have things that I treasure and understand. It only matters that they are precious to you.
xoxoxoxoxoxo
Calico
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Dunesleeper- it's hard to let go of things. Everything must be left behind, no exceptions and letting go is really hard. Vent away.
((((hugs))))) hope tomorrow is better!
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Thanks. I've been working on who gets what and have even started giving things to them. That is one thing. Having my mother start giving things away blows my mind. Mind you, she bought them. It's just that I claimed them. LOL. Well I plan on being here for a few more years, and I will wear them, so back off mother. Argh!
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Rosie, thinking about your scenario. In Oregon there are two Standards of Care for Sate of Oregon employees--either current, disabled, or retired. 1 Those that have all other medical insurances. 2. Those that have Providence. If as I stated earlier DWD is covered by the other insurances, and Providence didn't disclose that it wasn't covered. You have a causative action.(not a lawyer). But I can follow the breadcrumbs.
Yes, making waves is a good thing, The New York times is a national resource. I think, also, alerting the in state press would be good. There are people not necessarily in your position, but who voted for the law that would be ahgast that this was happening. You are in the position of choice by law, but denied.
Providence either abides by the law or withdraws from providing the service of insurance and ACCEPTS a provider that does follow the law.
Oh, I so hope you take Providence to the wall.
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Wilsie--I was glad to see your post. I hope you feel well enough to post from time to time. In the meantime, know that many of us keep you in our thoughts.
Rosevalley--Curious question: Do you happen to have life insurance? If so, do you know whether your life insurance will pay your policy amount to your beneficiaries if you decide to make use of the DWD/physician aid in dying option?
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Supposedly DWD can not be used to terminate a life insurance policy. The law specifies that the patient was terminal anyway, the outcome would be exactly the same with or without DWD. Still without insurance paying for it and the amount of the drug equal to one third my kid's tuition I doubt I will use it, being that hospice is free with insurance. Found another private hospice nearby that is stunning... wow what a garden! oy... it makes me angry that a viable option is removed by my Catholic insurance. I think that's evil. What if I had radical Muslim insurance - full veil or death? Where does it end? Insurance and religion need never mix.
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Ladies, I have been reading all the post catching up on who's where and what's happening to each and every one of you.
First Wilsie I'm glad you felt strong enough to post and let us all know how you're doing. I hope each day finds you stronger.
Calico, One thing I forgot to mention about hands and Xeloda or Doxil. I wore little white gloves that I found at Wal Mart. But I also got eight ice packs, four soft ones four hard ones. While getting treatment I would put my feet on the hard ice packs and the soft ones on top. Then I held the hard ones and put the soft on top. Funny thing is that while I was having treatment blisters would form where ever I did not have Ice pacs. But they do help quite a bit.
Rosevalley I've thought about moving to Oregon so I could die with dignity.
Dunesleeper I would be screaming, you have every right to be upset. I'm kind of in the same place. I've given my girls most of my things allowing them to decide who wants this or that. I have African Masks that I've had for over 40 years and I've given most away and kept two one for each of my daughters. They can have them, but I've told me I want to enjoy them to the end.
I took a step back this week and didn't go in for treatment or anything I needed Clinical Depersonalization. These people don't really know me and for them to change my appointment times or days without asking me is not their right. They should have called and asked can I possibly reschedule these times. Not assume that my life and time is just around cancer, treatment, doctors, therapist etc.
The doctors had felt it was time for me to have a hospital bed. Because of all the cancer in my spine, hip and femur, along with the lungs and ribs (Plus many other sites) they felt that the head of the bed could be raised or lowered and feet at times could be raised etc. At that time I only thought oh that could maybe help some of this daily, hourly, minutes of pain that is only eased a little with morphine. I didn't realize the size, that I would have to move around furniture, where to put such and I thought my bedroom carpet should be cleaned before the bed came. Well all happened in three days and my daughters who lived with me said wait put on the brakes. Have you thought this out. Have you ever been comfortable in a hospital bed. "NO"! I have a thermafore bed that is comfortable and I bought a single thermafore (or whatever they call them) that I rolled and use as a slanted form so that I am not laying flat. If I do, I lose all feeling in my legs, arm, even in my chest and it take two people and hours to lift me up and massage legs, arms, etc which takes hours for feeling to come back. My breathing then get harder and I'm thankful for my ventilators. So much has happened that my daughter who has autism just shut down. Bringing in a hospital bed, brought on all kind of talks and there feelings and how sometimes I act without thinking. Plus I can no longer do my lawn or flower beds etc. My daughters work and also take care of me 24/7 but the grass I felt was too long, we live in a gated community that has laws that grass can only be so high. Since I've had cancer and in the last year and a half no longer can do the lawn I've had two notices that why is my grass not cut. Now they don't want me to hire someone but they want to do things on their time and schedule. I understand but they don't think about these requirements that we knew existed when we moved in and we have lived here eight years. So I get upset they get upset. I try to do my rug myself and fall, then swelling in arm and across my chest. This cancer things makes us give up so much and losing control of the little things are so much bigger than I realize. So I'm canceling the hospital bed. The doctors want me to have it but it does not fit into my life or where I live and then things I love will have to be moved out and what for, me dong what they want without any thought about my daily life or home life.
So I'm tired this week emotionally exhausted, things have triggered anger and grief.
I can't wait to hear what all the doctors will say this coming week but sometimes I just need a break and step back and revaluate my life and plans and I have the right to take such time when needed, I control my life and I want Cinical Depersonalization these people are getting paid to treat or help me, they are not my friends or family, and I'm not giving up control to them.
Hope you ladies have a nice weekend I value each and every one of you and what you say, so much hits so close to home for me, I realize that it's here that there are those who truly understand.
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M360 - have you considered shopping for an adjustable bed on your own? I bought one when first dx and had bilateral mx as I had no way to get out of bed as I live alone. It's been great helping me deal with my ongoing, multiple issues & side effects. They come in all sizes, I believe, & some have the memory foam (would love to try that myself, but sticking with what I have for now). Just a thought.
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M how awesome n thro7gh r u
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Hi, (((M360))), I so relate to the feelings of anger and grief you expressed at the loss of autonomy, and the well-meant dictates coming from doctors and others about how you should live your life, even down to the kind of bed you should sleep in. I try to remember that if it wasn't this disease taking things from me now, it would have been something else eventually. I've grown to envy my mother who is 93 years old and has been in a nursing home for years. I'm so grateful that her dementia is a "happy kind". She can do virtually nothing for herself and is attended to like an infant would be, but she's not aware of what she has lost, and doesn't appear to grieve over it - a peaceful state of unknowing.
For the last 4 days, I've been what my sister would call a "hot, wet mess." I finally have talked to all 3 of my remaining siblings (2 have passed on) about the reality of my situation. It breaks my heart to hear the pain in their voices. I feel like I'm boarding a ship and can only wave good-bye to them as I sail off into an unknown future, leaving everything I've known and love on the shore. They will be the last men standing. I so hope they can take solace in each other and their own families and lives.
xoxoxoxox
Calico
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RoseV, thanks for your response to my question. There's so much to consider when trying to plan for whatever one can at end of life. I'm still in the midst of revisiting advance directives and addressing other issues. It is time/mind/heart consuming.
M360, You bring up in many ways the age old challenge--autonomy versus paternalism. Many medical care providers forget that we have the right to make choices for ourselves based upon our values and beliefs and they do not realize that their behaviors are often paternalistic as they choose to do what they think we "need" or what is "right for us." Challenging that way of thinking and acting often leads to a person being labeled a "difficult patient," a term which I'm sure the MO's I've fired over the years would use to describe me. Of course, I've also known medical providers who are trying to do the best they can to help--it's not that they necessarily think their values trump mine--and just don't stop to question, "Does this fit my client's perceptions and perspectives about her own needs?" Your term "clinical depersonalization" is intriguing. You certainly sound as if you feel better about taking a step back and grounding yourself so that you are more of an advocate for your own needs and wishes. You're right, too, about how emotionally exhausting the process of being true to oneself while also dealing with life stressors, that often just do not seem to end, can be. I'm hopeful that you are being extra kind to yourself these days. Keep being clear with others about what you need and what you don't need, and come here for support.
Calico, I understand well the heart breaking aspect of talking to family members about the reality of where you are in life right now and where you think you are heading. I once thought that I could "work through" my grief over the losses associated with mets, chronic fatigue syndrome, a rare cerebrovascular disorder (possibly triggered or made worse by cancer treatment), and most recently cardiac illness (that is, most likely, at least partly related to cancer treatment). And that I would "work through" the emotional heartache of witnessing my loved ones, most especially my wonderful husband, adjust to the changes in me, the changes in the life we share, and the prospect of their loss of me. Now I've come to accept that I'm not going to "work through" any of that and come to any significant resolution. I'm just learning better how to live with grief and heartache, and part of that involves being compassionate toward myself and living gratefully and as mindfully as possible.
I often have said that dying and no longer being a person on this planet was not nearly as challenging for me as the prospect of leaving behind my precious husband and other loved ones. Although I focus most on their grief, I also realize that I do not want to let go of those attachments. But when I think of their grief, I also remind myself that they will be more resilient than they or I might expect and that my legacy of love will bring them some measure of comfort.
While reflecting on what you said, "I feel like I'm boarding a ship and can only wave good-bye to them as I sail off into an unknown future, leaving everything I've known and love on the shore," I thought of these two quotes: "Man cannot discover new oceans unless he has the courage to lose sight of the shore." Lord Chesterfield, and "All journeys have secret destinations of which the traveler is unaware." Martin Buber. I think of these ideas referring not only to our leaving the known, loved, and familiar behind as we let go/die/transform, even if it's "just" into energy in the cosmos--stardust; I also think of our loved ones discovering more about themselves and how they will continue to live their lives, discovering new oceans and uncovering once secret destinations.
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M360- wow your post is so full. I had to read it and come back, read it again. Independence is a very hard thing to give up and our autonomy is so precious to us. Just being able to reach over and pick something up, care for laundry, home, garden and your body. I mean no one wants some one to wipe their behinds, everyone wants to do it themselves. Ever since we learned how and hollared-"Me do it!" Still I think it's something to remind ourselves that those that love us will want to help and don't mind. I certainly would loathe not being able to do what I want for myself.
I watched this with my father who went into the hospital walking and talking and came out paralyzed from the nipple line down from a huge aneurysm repair. He couldn't reach over and pick up a piece of paper without falling out of his wheel chair. My mother had to do daily bowel care and empty his bag. He never quite got over his anger, frustration and at times despair. My Mother took extraordinarily great care of him with love, 24/7 for 5 years before he died. Still I could see the humiliation when I would try and help turn him or assist my Mom. He didn't want me to see him that way. I understand his perspective and my Mom's. She would get upset that it bothered him. My Mother and I teamed up to care for my Grandmother when she was dying of IBC. We helped her shower, dress, whatever. We got up at night to check on her and scared each other trying to be quiet! It was a family affair, everyone pitched in. All time well spent.
Calico it sounds like your Mom is in a good place and it's a blessing she doesn't seem to remember or mind. My one Grandmother had Parkinson's and when she began to drool and needed to be fed, she just threw in the towel.She didn't want to live that way. She was an elegant well dressed woman, beautiful seamstress and artist and it was too much to have strands of drool off your lips. She was in her mid 80's and just quit. Mentally she was still there and that's hard. I remember my Mother, so upset that she was refusing fluids or eating. I told her to honor her wishes and she did. Everyone has their limits and their ideas of what is enough. I think it's a good idea to listen -really listen to what folks say in these situations. Too many people gloss over it and try to pretty it up- the reality of life is many times much harder and more complex. You need to step in those shoes and walk, or lay or wheel yourself through the days to know what life is really like. It's hard to imagine and painful to think about, so folks don't "go there."
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Calico BIG HUGS
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Thanks for the hugs, Blondie, really need them today and hugs back to you!
My CT results showed some improvement in the lungs, but continued progression in the liver. I'd talked to the onc a month ago about stopping treatment, the side effects being too debilitating to me. He said if he were in my shoes, he'd give the Halaven "the old college try", and see what happens, but knowing how I felt, would not pursue further treatment after that. So, he has put me on Halaven, but without a great deal of conviction.
Even if Halaven helps, and I can tolerate it, I doubt that I'll get a very long run on it. As he said, the cancer in my liver is "particularly obnoxious." Yes, indeed.
Thank you, Brendatrue and Rosevalley, for your beautiful posts. Unfortunately, my mother has not always been in her "happy dementia." She had a long slide into it, and was fully aware of what was happening, but I'm just so grateful that she finally reached the happy state. May she stay there until her last breath.
Love and hugs to you all,
Calico
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Calico, I hope that you have a better and longer run than you think on Halaven! I will put on my cancer killing butt kicking boots and stomp on over your way and see what happens. But I am also sending lots of hugs your way also. This whole BC journey is one giant slippery slope after the other. I see the MO in 12 hours, and I already shut off my hearing so I don't hear the word chemo. I so want a break from all of this. I just finished rads a week ago, and I do not want to start up chemo this soon. But it is what it is, and my choices are few. But after doing chemo, surgery, and rads I am just tired. Oh so this is the new normal? Yikes...............
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Hi, Beachbum, thank you for directing your bad-ass boots my way!
I can see from your history how much you've been through in such a short period of time. You've walked through a wall of fire, and are one battle-hardened soldier! A quote I keep coming back to is, "Courage is fear holding on a minute longer." (Thomas Fuller) I see that courage everywhere on this board. I'm so sorry you and everyone else is having to go through this, but so grateful I'm not having to do it alone.
My onc said again yesterday, "I will take care of you" after I stop treatment. I am at a loss how to express proper gratitude for that.
xoxoxoxoxox
Calico
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Calico - breast cancer treatment would be OK maybe if there was a treat.................and if only they could fix all of the dreaded SIDE-A-F**KS. I think they are worse than the dang tumors. Not too sure if I am going to go from cumulative SIDE-A-F**KS or a tumor..............sigh.
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I'm pretty sure the se's are going to kill me (I react to everything and every amount).
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Wow, I just came across this thread and am so thankful. I was recently diagnosed stage IV with liver mets. I am doing well on Faslodex right now but who knows how long that will last. I have lived a good life and am reasonably certain I will not pursue chemo once the Faslodex stops working. I know many of you have made different decisions but I just don't think it is right for me. After reading through the thread a couple of things jumped out at me.
I came across Dr. Susan Love shortly after my initial diagnosis in 2009. Her website and writings have been a tremendous help. I was heartbroken when I learned of her cancer diagnosis. But, this wonderful woman turned the process into a temendous learning experience and has written a lot about the side effects of treatment that doctors simply do not understand or take seriously. Some one else has already mentioned her work and links but here is a link to her entire webinar on this page: http://www.sharecancersupport.org/share-new/learn/blog/collateral_damage_1/ It should be mandatory for all oncologists.
Rosevalley, I just made a post on another thread about the religious organizations' take over of so much of the healthcare in the U.S. I did not know it was happening in insurance companies and I am really sorry you are stuck in this situation. I have great respect for death with dignity laws. There is a great documentary that I saw on Netflix called How to Die in Oregon. It is an excellent and touching film. Have you contacted Compassion and Choices in Oregon to see if their advocacy might help? I wish you the best and hope things work out for you.
And finally, I recently came across a lovely quote from Joan Baez's mother, Joan Chados Baez, commonly known as Big Joan.
"Friends who want to celebrate my new adventure, please gather round. Don't grieve, for it's only a worn out body that's leaving and the memory of any sad times goes with it. The good memories are in my spirit and my spirit is with you today. I'm in your midst, for there's nothing more valuable to me than to be with you, my beloved family and my gracious friends.
"Take a moment for silence and wish me well. I'll hear you. Then make the bottles pop. You know I love champagne almost as much as I love you!"
"Big Joan"
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P.S. I just found this very interesting article about drugs used in Oregon.
http://www.wweek.com/portland/article-22574-penalized_by_the_death_penalty.html
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There are so many neat folks on these boards.. wish I lived closer and could meet you for coffee and conversation. Loved the Baez quote and feel it the way she describes it. We go on just not in the same form, I am sure. Beachbum- I busted up! Side-e-f*#ks... how perfect is that! A perfect description. My oncs have never understood why or how I can just walk away from treatment and I stare at them in utter amazement that more patients don't throw in the towel and bail out of the boat! Who can take years of this? I mean you can power through 6 months, but years and years with no end? OY! Sometimes I go to get out of a chair and I feel like a rusted out tin man.. creeeeak..at 56. ugh. Or maybe I am just a lilly livered sissy who can't tolerate the meds. I watch what some of these women go through and just sit mouth open in astonishment. I hear the word chemo and cringe and feel like "just shoot me and don't miss - anything but that." I swear ACT dose dense treatment leaves us with post traumatic stress disorder.
Calico- your oncologist sound like a compassionate person. I hope what he/she says is true for you and they don't leave you high and dry at the end. I have seen some folks abandoned and a few oncologists hit the wall running to head off misery. Why there is such a difference remains a mystery to me. Do you have many side effects from the liver mets? Any pain? I hope not. I wish you clear sailing to the other shore!
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"Calico i am so happ y 4 u that mo said that . What is the regiment u will b on with halavan. What kind of side effects. Know that if u go off i think u can always go go back on. . I feel that i am gettin weaker, everday. Sinceb i got out of rehab. Spoke with the dr he said i was declining. Lungs r getting worse, n mucus thick white stuff, nothing else.
Wonder what dying feels like?
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Oh yes, it certainly can and does cause PTSD but like everything else in this life it is ignored because the oncs don't believe in se's - absolutely none! As for the overtreatment - I've had that discussion with my onc and she understands (as does my PCP) that I have my limits and I have dropped treatment everytime I've had bad se's - my rule is "quality of life is everything" - I am 69, widowed with no children - only person who would really miss me is my wonderful Penny (bichpoo rescue who is my shadow) - what I hate is all the young mothers with children and husbands and also the young singles who haven't even had a chance at love.....oh well.
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Hi, Rosevalley, Blondie, Sandy and all!
I honestly can't say I've had any problems from the liver mets YET - no pain or fatigue that I can attribute to them. The chemo gets all the credit for those! I asked the onc what it would be like when the liver failed, and he said I'd get very tired, but shouldn't be in pain. Of course, I know better than to believe him on all that, so why do I bother to ask??????
Maybe I shouldn't believe him that he will "take care of me", either, but I have to say that he's said that to me from the 1st day we knew I was Stage IV 5 years ago. A few weeks ago, when I gave him the POA for Health Care, he said, "You don't need that. I know what you want." Obviously, others don't, so I do need it, but the message I got was "I got 'ya covered." He also filled out the Physician's Orders for Life Sustaining Treatment (the pink sheet known as a POLST) with me, and we were both on the same page, no issues. I'm DNR, comfort care only, no hospitalization unless comfort needs can't be taken care of where I am, and no feeding tubes.
I'm 2 weeks on, 1 week off with the Halaven. Fatigue and neuropathy are the two most common side effects which I already have from prior chemos, so what else is new? Oh, and I get to lose my hair again! I'd gotten it clear out to 1/2"!
I TOTALLY agree on the PTSD! I'm sure I've got it, and a friend of mine who has gone through chemo and hasn't recovered from SEs definitely has it.
Blondie, I'm so sorry about the fatigue and lungs, and I send thoughts and prayers that you are as comfortable as possible. I wish I could tell you for sure what dying is like, but I obviously have never done it before. What I think and hope it's like is going into a deep, painless, and anxiety-free sleep. I have 2 friends whose husbands died at home of terminal conditions, and that's what it looked like to them.
Love you all and so glad you are there.
xoxoxoxox
Calico
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