A place to talk death and dying issues
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Thank you, Snow-drop. I really appreciate it. It’s been a crazy few months.
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Thanks for asking Snowdrop. The bill got out of the first committee. Meaning it passed in one small committee. It still has to pass in three more committees and then the whole house and senate votes. I am learning a lot about local government. The chair of the first committee and sponsor of the bill has a 39 yo daughter with stage IV cancer. She was a very powerful speaker at the committee vote. I couldn't figure out how to raise my hand to speak. There was supposed to be a yellow hand you could click but I couldn't find it on the screen. But I still have three more committees to try. I need to get better instructions.
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i can't even remember if I already posted to this topic! I sometimes call it "chemo brain"
I don't like the portrayal of stage 4 people in commercials. Treating us as chronic disease sufferers sucks. One of my ex doctors told me I may have chronic, but I think he was trying to make me feel better, and it felt worse as if I were in limbo.
As for bringing up DWD, I've always secretly wished I could have that wish come true when things start going downhill. I have a DNR and hesitate to bring up DWD to my kids.
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I don’t necessarily mind stage IV people in commercials, although they represent a small percentage of stage IV patients. I know it really bothers others who are struggling and I can understand why but at the same time those folks do represent me! I am not sure how a commercial would get that point across. As for chronic, I have never seen a bc med commercial that uses that word. They talk about living longer, more days, etc., but I haven’t heard the word chronic used.
Doing well with stage IV makes those who fit into that category odd ducks. I don’t mean for people to see me, or those on commercials, as the only face of mbc, as we most certainly are not but we are one of the faces of mbc. I can’t change that, I did nothing exceptional to make that happen. It’s just the way my mbc behaves and yes, I know that can change in a heartbeat!
* BTW, I am not on any of those meds in commercials, only on Aromasin.
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If I may interject, I think the whole chronic/terminal debate isn't so much about terminology or even about the fact that both kinds of MBC patients exist. We do. There is room enough for all of us, and at different times many of us will probably fit into both categories.
No, I think the underlying discomfort with overemphasizing MBC as chronic is twofold: 1.) It is not currently the experience of the majority of us, although hopefully it will become the experience of more of us as treatments improve, and 2.) An overemphasis on the chronic aspect can silence, erase, and minimize the experiences of those of us who are more "terminal," and make us unseen.
This is especially hard when MBC is already so unseen.
How many of us have experienced being unseen with all the early stage survivorship positivity swirling around? These are all things that were actually said to me after my early stage diagnosis:
"No one dies from breast cancer anymore!"
"Oh you got breast cancer? You'll be fine!"
"Your cure rate is virtually 100%."
I feel the need to say the caveat that anyone who is diagnosed with MBC should not give up, should not be too discouraged, and should not plan the date of their deaths prematurely. We never know how long we have, and how well we respond to treatments. It's hurtful when doctors and people in general disregard us because of our diagnosis. (I've had that happen too!)
At the same time, it's also hurtful when people refuse to see the reality of our disease. Or when people assume that if we are not doing well it must be because WE did something wrong, or our medical team is incompetent, or whatever. More things people have said to me:
"I know someone who cured herself of cancer by doing Qi Gong."
"Have you tried taking vitamin C? Clearly you are not getting enough antioxidants."
"Please try essential oils. Chemo hasn't worked for you. Please."
The reality is that many - too many - people are still dying from MBC within a few years. For the exceptional responders who do not, that is wonderful, and hopefully there will be more of us soon. In any case, I think it's not so much a question of terminology, or there being room for all kinds of MBC. There is room for all of us, and most of us will be both chronic and terminal at different times. I think the root of the discomfort really stems from the underlying tendency for society as a whole to want to un-see us at any available opportunity.
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buttonsmachine,
I agree with most of what you’ve written. Personally, I haven’t seen an overemphasis on the chronic aspect of mbc. I don’t use that word nor do my docs. As far as advertising goes, they certainly don’t use the word chronic (in ads for Ibrance or Verzenio) either. There are simply to few of us outliers to make the word chronic applicable and given the fact that our situation can change in a minute, chronic seems the wrong word.
Yes, I too am driven a bit batty by those offering alternative cures but I imagine that it’s the same for any disease. I think that people don’t see the reality of mbc, in part, because of the huge emphasis on early detection. Although early detection is good it has led people to believe that early detection takes care of everything and you never have to worry, which we know is patently untrue.
Lastly, I imagine that most people with terminal illnesses are overlooked to some extent and feel their disease is not understood by the general populace. After all, I knew little to nothing about mbc until I was dx’ed just as I know little about other terminal conditions.
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yes exbrnxgrl, but then we do not know about those conditions in general either , not just about terminal part of them. I think. While BC is everywhere but MBC is invisible.
In general I think society does not want to see death ..
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Buttons, good, thought-provoking post.
From time to time, we cover the topic of of commercials for mbc treatments. I had a few eye rolls when they first started airing, but soon put it in context. Commercials, by nature, only present the hyped-up positive of what they're trying to sell. The Big Mac you get at McDonalds never looks like the beautifully assembled ones in the TV ads. Neutrogena face cream doesn't really make your skin look as pure as Jennifer Garners's—even her skin isn't wrinkle free in real life. And most women using a Peloton exercise bike aren't sexy, buff, stick-thin moms sporting bouncy ponytails in a laid out home gym with spectacular view.
I don't pay much attention to the commercials for different kinds of drugs, my finger hits the mute button on the remote when they come on. I think there are a lot of people like that, tuning out what is not relevant to them.
I don't really put stock in any commercials. They are just there to get you to try their product and market the hell out of it, regardless.
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On principle, I dislike all prescription drug ads, be it in print or TV/Internet. That aside, I agree with divine. No maker of any product, for which they are shelling out huge amounts of advertising dollars, is going to show you the downsides to their product . I am pretty sure that the warning given at the end of drug commercials (delivered in hyper warp speed) are only there because they are legally required to do so
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Here's my second email to the NM legislators who are considering the death with dignity bill. It comes up for a vote in another committee in the state house of representatives this weekend. Then on to the full house. This may take a while.
"Hi. This is Janet Smith again, a stage IV cancer patient. I'm writing to express my support for HB 47. After giving you my general views on the bill, I wanted to elaborate to try and make you see my very precarious and urgent position.
I've had metastatic breast cancer (MBC) for five years. That's a lot, right? Well, yes it is, given that the median survival with MBC is three years. You may hear or read from various sources that MBC is not a death sentence anymore. In the criminal justice system, people live for a long time on death row. They still have a death sentence. Their death is guaranteed to happen in some finite period of time, as is mine. And I participate in two MBC online forums where people die all the time. On one forum, someone dies at least once a month and when we get "busy," it's more like once a week. So my time is pretty much up. I may live another two to three years if I am lucky.
So now I am thinking about my future, a word MBC patients use sparingly. What will I have to do if HB 47 doesn't pass?
1.) Employ a direct and necessarily violent form of ending my life. I just don't have it in me to do that. I am basically a chicken at heart.
2.) Wait it out. Just go through the natural dying process with all the pain, all the suffering, and all the terror that I expect with no control. I guess that's what those against HB 47 want.
3.) Voluntary stopping of eating and drinking (VSED). Yes, it even has an acronym.
If you ask a death with dignity advocate and you don't live in a right to die state, they might suggest this option. The name tells you everything. The person can choose to stop eating and drinking in order to hasten the dying process. Depending on the person's condition, it can take between one and several weeks to die. The few websites I looked at describe it as not painful but then mention coughing, choking, and shortness of breath. When discussing "discomfort" during the VSED process, the Compassion and Choices website says "It may take healthcare providers some time to find the best medication or combination of medications to meet the individual's needs. Many medications used at the end of life have a sedative property and cause drowsiness, which may lessen possible symptoms of discomfort in the VSED process." So we are going to call it discomfort instead of pain. And sleeping through it is best. (So much for that profound deathbed goodbye scene.) I've heard others describe it as horrendous. Horrific. But VSED would actually be my choice if HB 47 doesn't pass. It makes me feel a little better knowing that I have a choice and I can act on that choice, however horrendous it might be.
But wouldn't medical aid in dying be a better choice? I choose the time. I choose the method. I choose the people around me. Having a choice is always better than not."
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I’m very impressed with your letter, Jaycee. I hope they really do their homework and listen to the people asking for this, and I hope they come through for the state
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Jaycee, very honest and realistic presentation of what death looks like for Stage 4 cancer patients. Thanks for sharing and for your efforts, and I sincerely hope you are successful!
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Jaycee, I agree with the others. Very well written, I hope they listen and respond with action.
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Jaycee49- very well written letter. I think a turning point for California was when a 22 year olds with brain cancer had to move to Oregon to have DWD - that was a stark reality too much to deny.
Good luck- I hope it passes.
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NKB, I keep telling them that if it doesn't pass, they will have another Britteny Maynard on their hands.
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Excellent, Jaycee. Thank you for fighting the good fight!
Tina
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It's a very thoughtful letter, Jaycee.
For anyone who is interested, here is a good article - mostly about palliative sedation - but it also touches on DWD issues too: https://www.pbs.org/newshour/health/does-palliative-sedation-ease-suffering-during-end-of-life-care
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thank you for sharing jayce
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The bill passed in another house committee yesterday. Now the whole house has to vote. Then two senate committees. Then the whole senate. If it passes all of those, the governor already said she would sign it. We may get there. Thanks for all your support. No one else to talk to about this (who understands).
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Jaycee, that’s great. I hope it gets the votes.
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Jaycee you’ve done great job. As you said it is the thing no one would understand better than us. As a stage iv-er every time I experience severe brand new pain or intolerable se etc I come closer to the fact that this right should be legitimate. You might also want to take a look at the Switzerland and newly Portugal laws for dwd, for encouraging lawmakers. I admire your hard working in this matter.
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Go Jaycee!
The state I live in it is not law yet but four kilometres to the south it is!
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jaycee, look no further than north of the border. Canada passed laws in 2016, with a few amendments last year. There are printable forms online for citizens to complete while they feel competent to do so. Good luck on such important work
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Congratulations, well done!
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Here is the third email which I had to write quickly because they started doing house meetings at hyperspeed. And I had to write it twice because I was not allowed to use the word "choice" due to an abortion bill also on the docket. Wouldn't want to rile up those folks. The full house bill PASSED late last night. It was close. Now two senate committees and the full senate to go. The governor already said she would sign it. Did I already say that?
"In our society, we don't talk about death. We don't even think about it. Most of us are not required to. But some of us, like me and others who are diagnosed with a terminal disease, have no way to avoid it. We can't avoid the punch in the gut we feel at diagnosis. We can't avoid the never-ending doctors' appointments. We can't avoid the interminable tests and scans and the anxiety they produce. We can't avoid taking one drug after another, each only working for a limited time and with a myriad of side effects. We can't avoid contemplating when enough is enough, when the side effects of the drugs are worse than the disease. Avoiding that decision is not so easy. As the disease progresses, there is a fine line separating the pain caused by the drugs and the pain caused by the disease.
So for us, death is right there, always. But one last option could be afforded to us. The option to die with limited pain and suffering. I say limited because "pain-free" and "peaceful" are misnomers in the last stages of life, even with medical aid in dying. There is still the grief we are causing our loved ones. There is still the sorrow of losing the joy we have always taken in living. There is still the anxiety of wondering what the process will be like. No one can tell us that. So if you think medical aid in dying is an easy way out, think again. We just want the OPTION. We may not even use it. Having the option gives us enough peace to exhale for a short while before we die."
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jaycee, thank you for your thoughtfulness in writing this! This was beautifully written. I hope it strikes a chord with the law makers.
Carol
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good letter Jaycee49- still don’t understand why the vote was “close” but, I find there are a lot of things I don’t understand.
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NKB, 39 votes yes and 27 votes no. There are 70 representatives so a few "excused" or "absent." Don't know the difference. One guy who was excused is really for it but never shows up for votes because he doesn't want to vote against his party (Republican). The votes were basically along party lines, Dems for, Reps against. Weird. This was my first foray into local politics in NM. The "abortion" debate lasted about three hours and accomplished nothing. Then there is the traditional NM issue: Spanish land grants. These go back to when the Spanish held NM and doled out land to settlers. Land grants. The descendants of these settlers still try to claim they own land that they do not. Since about 1800. I could not watch the whole thing. It made me crazy when such an important bill was due to come up. They didn't start that debate until about 7:30 PM. The session had started at 9 AM. Everyone was exhausted including the poor woman who sponsored the bill and whose daughter is dying of cancer. The daughter couldn't attend because her "bones are starting to break" spontaneously. I was sobbing when she said that. Thank you. Had to get that out.
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Jaycee, what a great letter. I’d like to let my family and friends read this so they can get a sense of what we feel and why we always think about this disease. You worded it beautifully. Good luck at the next session.
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Excellent email, Jaycee.
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