STEAM ROOM FOR ANGER

Micmel

Chronic~I also have all my paper work and power of attorney set and filed and notarized by an attorney. Not leaving anything to chance, don't want wires all over myself. What I mean about we don't have any choices how it will go for us , is because we don't.......at least I don't. I have my two kids that are beneficiaries for my life insurance policy. If there should be any signs of suicide or any such thing. That benefit would not be paid out to them. I could never allow that to happen. So in my Case I don't have a choice. The second thing is doing that and going to those lengths to take my own life would destroy my family. That would not be fair to them in any way. None of this is fair and some see their ways different, with different choices, but for me. That's is just not an option! I am off to bed. Rest well ladies. ~M~

Janett2014

Not to be morbid but... if you have had a life insurance policy for at least two years (or one or three; it depends on the company), it WILL PAY in the case of suicide. If you're worried about it, check your policy's exclusions clause.

marijen

Yes, I was just going to say my policy reads the same.

Janett2014

I wonder how many beneficiaries don't even put in a claim when an insured person commits suicide because they just assume it won't be paid?

runor

I am not metastatic. But I think about the end. I hope it's something quick, like a heart attack. My dad died of cancer (no cancer on my mom's side though, the side that seems to count in the breast cancer tabulation). He laid in that hospital bed, my once larger than life dad all curled and bent, shaking in agony. It was so past pain. The cancer was in his bones, his spine was mush. He was in excruciating hell. He had been a rancher all his life and there was a rule. If you had an injured animal you did what you could to save it and if there was no saving it, you shot it. No man who called himself a man allowed any creature in his care to linger and languish in pointless agony. That was dirty farming. Bad animals either got healed or got shot. I remember the day I said to mom that if dad had been a cow, we'd have shot him a long time ago. Being forced to watch him die that way was an obscenity. By the time he passed we were all sickened and destroyed by what we had seen. You can't get that out of your head. No one was made better by it. No higher being was edified by this human sacrifice. Because that's what it was. Human sacrifice. As if dad's suffering was pleasing to some deity.

Towards the end they withheld food and water. He got morphine which was no longer even close to adequate for pain control - another medical failing that angers me still. It was a death vigil, a gruesome end to an outstanding life. A tragedy, a travesty and absolutely unnecessary.

Canada is now trying to iron out Right To Die legislation, doctor assisted suicide they call it. Suicide? Why, if you have a terminal illness, is it suicide when your death is imminent? The word suicide indicates some failing. Sure, the failure to suffer pointlessly. As if that's the right thing to do, languish until everyone is so messed up in the head - yeah, that's the legacy I want to leave behind; emotional horror.

Could I ever have pulled the plug or pulled the trigger on my own dad? No. BUt had the option for someone else to painlessly usher him out presented itself, I might have taken it. Hub and I just got wills and such in order. Medical directives are part of that. I have not filled mine out yet. But I am sticking with my hit man idea that I had when this cancer thing all started. Hire a sharp shooter, pay him in advance and when things get bad I will call him and tell him, any time now, Guido. And then one day when I least expect it, when I am in the garden or feeding the chickens - boom. Over, done, no suffering. I won't even see it coming. That's what you pay for. The skilled guys make sure you never see it coming. It's either going to be cancer, a doctor with a needle full of death or a sniper in the trees that I have hired to be there. Roll the dice.....

runor

This post has been deleted. It was about obnoxious family of origin stuff. About ruined sibling relationships. I really don't need that crap on the internet forever. To the posters who read and replied, thank you and it's good to know that the idea of family being there is often a myth. As in all things in life, who you get for family is a crap shoot.

NotBrokenJustBent

So sorry for those suffering from poor health. Runor, you did the right thing and you were very courageous in attempting to reach out to your bro. I wish it ended differently but who knows, perhaps someday you will get that call. I hope writing your thoughts was cathartic.

JKL2017

Runor, our dysfunctional families frustrate & anger us but also provide good material for any books we may want to write in the future. I fell out of touch with my youngest brother after our mom died (she had been the person keeping us all connected). I made an effort to call & write my sister & always asked about my brothers but seldom heard from any of my siblings. I was, therefore, excited when a Christmas card from my sister arrived in the mail many years ago (I laughingly called it a "Christmas miracle"). Her upbeat holiday message was that she had forgotten to tell me the our brother had died some months ago. She also informed me that she couldn't stop me from calling or writing but that she probably wouldn't answer in the future because she was just too stressed & too busy to deal with me. Needless to say we are no longer in touch. (I do regularly call or email my other brother & we have a pleasant, supportive relationship.) Families, gotta love 'em!

jaycee49

I haven't been able to stop thinking about LoriCA's post. Then Micmel saying we have no choice. Then chronicpain talking about suicide and that continued for a few posts. When I read LoriCA's post, I just thought how I would stop treatment, at least THAT treatment, if I was in her position. Pooping on yourself every twenty minutes? Five times a day doing laundry? Your MO not believing that the diarrhea is a SE of Taxol? I would stop the Taxol and that other one that starts with P which also causes diarrhea. How did we get to suicide? I guess stopping tx is the same thing ... maybe. But that is what I will do. And I am not just saying that either because I have DONE it. I have stopped two different treatments that were making my life miserable but that MO said I needed to be on. Maybe it depends on how much you think people in your life need you to be alive. Really want you to be alive. Think it is ok for you to suffer terribly to stay alive. I have no such people. My DH, DS, and sister will be sad but all would want me to decide when I have had enough. I guess I am just not good at suffering. I have a very low pain threshold and, I guess, a low suffering threshold. There will be enough suffering in the dying process. I don't need to create any extra with treatments beforehand.

LoriCA

Thank you for your kind words Micmel. I did skip my last Taxol treatment and now 5 weeks later I am finally 100% "normal", at least what I call normal haha. I needed this break. Now to decide if I can go through with the final two doses and a few more months of hell, but I got suggestions for an alternative to Taxol and a prescription med to try for the diarrhea from women on this board, so I have some things to discuss with my MO before my next infusion. I think I've made my point that it is definitely the Taxol causing it.

I completely understood how the discussion jumped to talk of assisted suicide. At the back of many of our minds is "how much will we be able to take?" when we get near the end and I'm grateful that California legalized assisted suicide a few years, although it's the furthest thing from my mind right now (the overwhelming majority of people who choose assisted suicide in the states where it is legal are people with advanced cancer). But maybe that's a better discussion for the "Death and Dying" thread.

Stopping the treatment isn't an easy decision for me jaycee49 because I have an extremely aggressive form of IBC that devastated my body in no time at all, literally. One day my bone scan was clear, a week later I had more bone mets than they could count and everyone was afraid that my spine was about to disintegrate any second. Right before my eyes the tumor fungated, ate my entire right breast (I'm flat with a nipple on that side, no mastectomy needed), moved into my left breast, then into the chest wall, into my brachial nerves and I lost use of my right arm, and into my liver all while I was in the hospital and they were trying to figure out why it was growing so darn fast (thankfully my doctor sent me straight to the hospital when I showed up with every textbook symptom of IBC in the extreme). The extensive bone mets showed up a few days after I was discharged when we did another PET scan before deciding on treatment options with my MO. They didn't think I would last 60 days and I was on morphine every 4 hours for the pain, so for a while I was too drugged up to even realize what bad shape I was in. I felt fine when I drove myself to the hospital, and within days I was on the edge of death. I'm still in shock over how fast it all happened.

My response to Taxol has been nothing short of miraculous and absolutely no one expected it to be so good. My MO is concerned that if I stop before I complete the entire course and the tumor starts growing as fast as it was before, it will be resistant and once again I'll only have weeks left. I'm not ready to give up that easily, I fought hard to get back on my feet and am looking forward to having some time to enjoy what's left. I'm mad that just when I was beating back the cancer and and had some small hope, this stupid SE has robbed me of my quality of life. Now that I'm 99% percent positive that Taxol is the cause of the problem, I'm trying to psyche myself up for completing the last two doses, even though it means a few more months of hell, because it would give me some time to enjoy life once I come out the other side. Before this SE started, I was actually feeling pretty good and had started getting out, even went camping one weekend, so I know right now it's just a matter of getting past this temporary issue. Once there is no longer any upside, that's when I'll stop treatment, but for me right now this isn't just life-extending, it's life saving. My husband and my family all support whatever I decide about treatment, none of them want to see me suffering any more than necessary (and they've seen a lot of it over the past 6 months) and I don't have any children who need me. My husband and I have had many, many discussions about it. But for now this is just a temporary hurdle for me, as hard as it is, and the upside is wonderful (remind me that I said that after my next infusion hahaha!!).

jaycee49

LoriCA, I'm so glad you responded. I did notice how recently you were dx but it didn't really sink in. Six months! You have barely had time to adjust to any of this and you are doing amazingly well all around. I'm so impressed. Assisted dying in not legal in my state and I don't like to confuse it with actual suicide. Chronicpain did mention guns and drugs so I thought that was where she was going. I'm so glad the Taxol is working so well and hope you can manage a few more months. I used Lomotil when I was on that kind of chemo and it works well. MO's are not very proactive with SE's and need to be. Mine was useless. I have a new MO but I'm on an easy tx right now so I'm not sure how she will be in the future. They do need to be lectured once in a while, put in your shoes. I asked mine once, "how would you like diarrhea running down your legs?" No response. None.

I hope I don't have to remind you of the upside after your next infusion because the anti-diarrhea med will be working so well.

Micmel

Chronic~ My DH works with someone who he has known for a while now. One day he was sitting and working on the computer, and this man. Looked over at my DH and said, my wife has breast cancer, and it's bad. My DH looked back and said mine has breast cancer also and it's bad.....either of them had known that the other was dealing with this at all. What he came to realize after talking to him for a few more times, his wife had chosen not to do anything about it, wether it be religion, or naturalistic ways, she had chosen not to any conventional treatments whatsoever. It became obvious that I was going to do the conventional treatments and try everything I could to save my life.

Fast forward a year, i went through two kinds of chemo and many surgeries. She chose to go to Mexico for a holistic treatment that costed $15k. It did nothing except almost give her sepsis, because of unnatural herbs and things that they weren't even aware of could have been in it. They came home with her sicker and her tumor grew two more cm's during her time of holistic treatment during that year. Her pain was unbearable and her tumor in her breast was overtaking her entire chest. Her cancer was spreading by the Month and they didn't even know what type of cancer she had because of no biopsy or anything.

Fast forward another year... The last time DH saw him, he looked haggard and DH was told he didn't know what to do except watch her die. She is suffering. Everyday suffering because of a choice. Or even a belief. DH sat there feeling guilty because he was asked how I was doing. He had to look at that man in the eye and tell him that I was in remission and doing very well. All because she didn't try conventional treatments. It's not my choice, and honestly none of my Business what people may choose to do.

But choosing not to do the treatment becomes actually more painful and horrible than you could ever imagine. The suffering is a catastrophe to watch. My DH saw that mans heart first hand through his eyes. The devastation of knowing soon he will loose this person he made life plans with. Building a cabin. Hiking every weekend.... marathon runners. Natural eaters. Non meat eaters. Non smokers or drinkers. And health food nuts. Vitamins experienced, the healthy way to live organic. And she still got cancer. I believe it's all an individual approach and an individual decision, when we are done with treatments. Why I said we have no choice, because I honestly don't know anyone that would really take their own life and put loved ones through that horror and sadness on top of all the battling and suffering already endured by the caretakers. I have never been a caretaker for a sick spouse. So I can't speak from experience,but if someone I loved did that to me. I would hi tail my ass up to heaven, and kick their selfish ass myself. But then again it's an individual perogative. A difficult damned if you do and damned if don't conundrum. There is no easy way out any way you look at it.

Much love to all ~M~

LoriCA

Hehe yep only 6 months jaycee49 and wow has it been a crazy rollercoaster! I just finally started getting my head wrapped everything, coming out of the combined morphine and chemo fog, when this intolerable SE decided to complicate things and it's been such a set back for me emotionally. I had come to terms with the fact that I was going to die any day, then I had a glimmer of hope dangled in front of me when I surprised everyone by responding so favorably to chemo, and then wham, pure hell for the next 3 months with no idea why (until my last scan I was scared to death that the cancer had spread to my GI tract, or that my bone mets had progressed since I was told to watch for bowel incontinence as a sign of imminent spinal cord collapse) and it turns out to be due to the treatment that saved my life. Ugh.

Lomotil was recommended by Lita57 too, thank you. I am going to insist that he write a prescription for it. OTC Immodium doesn't even slow it down but maybe prescription strength will give me some relief. My MO usually has been good about my palliative care up to now given that I was in such bad shape the first time he saw me and he's usually more proactive than I am about things.. He's just been adamant that what I've been experiencing is not a SE of Taxol and convinced that it's due to something else (especially since I had absolutely no problems with Taxol until I was almost finished with the weekly), this is the only time I have ever had a problem with him not addressing my concerns immediately. I even told him that I'm not sure if I'm conveying exactly how bad it has been. I know that many people complain about diarrhea while on certain chemo drugs but this is not a minor irritation, when I say every 15-20 minutes all day long for more than a week that is exactly what I mean (and then it slows down to "only" 15x a day for another few weeks) and it ALWAYS starts within 24 hours of a Taxol infusion. Now that I'm on the monthly dose of Taxol and combined with Herceptin and Perjeta, both of which have diarrhea as a SE, it's like a triple quadruple whammy haha! I can laugh about it right now because I'm actually feeling pretty good today (and I wasn't at all the day I responded to Lita57), I hope I can still laugh about it after I try the Lomotil!! Thank you.

Lori

VLH

Micmel said, "All because she didn't try conventional treatments." Sadly, some people who started chemo around the same time I did have had recurrences or metastasis. Especially with triple negative cancer, catching it early, surgery, chemo & radiation can all prove ineffective. Just sharing a different perspective...

Micmel

VLH~ I agree completely, it's all each and everyone's decision and perspective. I just knew how she suffered, it just made me see that cancer is the common thing here that destroys. You either take it on the front end or back end. Some get lucky and beat it. I hope to goodness it never would come back. ITs basicslly a crap shoot.

When I said all because she didn't try conventional treatments. I meant that my poor DH had to sit there and look at this man feeling, that I had chosen a different path and I was doing better. His friend said to my DH. “Maybe she should have at least tried “. Therefore I and my DH know. That was something that has absolutely crossed their minds. And like I. said. It really wasn't any of my business, I was just sharing an experience first hand to back up. We. Just don't have a choice. We go through it one way or another once diagnosed. It's like Iiving in a haunted life, scared all the time. Fear becomes present everyday, every ache. Every pain. It's just the way it is! Have a peaceful nights rest! ~M~

jaycee49

Lori, who cares what it is caused by? You have diarrhea and Lomotil could help. I can't figure out why your MO would not want you to have it. I'm like Lita in that everything causes diarrhea. I was on Herceptin for a year and it never caused diarrhea. I did hear from women on this forum that Perjeta caused it big time. Did you start Perjeta before or after this ugly SE showed up? That might be an interesting topic to discuss with your MO. Just a thought.

Allowing a loved one to die with dignity and without guilt is the ultimate in compassion. Wanting to die with dignity is not selfish if your caregiver has that kind of compassion.

Beatmon

Lori, I know eacactly how you feel. Lomotil really helps me, I’m sure I take more than the recommended dose..shhh don’t tell. I take before I leave my house and if I eat out. I have thrown away so many panties. You have one of the worst cases I’ve read about.

Too bad you aren’t on pain pills to constipate you. Have the cultured your stool just in case. I think that would be a very smart thing to do. A couple of weeks ago I had that bad stomach stuff going around with 24 hours of extreme vomiting and diarrhea so bad it happened in my sleep. I was so mortified . My pcp ran a culture just in case which wS negative. So now I’m back to intermittent every other day...5-10stools daily.

I purchased on Amazon some panty liners called Clean Seat that go higher in the rear than the regular panty shields.

I hope that you get better soon. I did have a twitchy tummy before starting taxotere, Herceptin and Perjeta but I had never soiled myself....so tells me it has to be one of those drugs.

mistyeyes

This doesn't really belong under this title, but since you were talking about treatments, I know someone going to Germany for treatment there. Something about that they do treatments not using chemo, but with other methods. I haven't heard anything about it here, just on TV and internet. Does anyone know of anyone who has done this, or is there anyone from Germany on this site?

Anonymous

Been reading but out of time today - back soon.

Diane

lightseeker

For diarrhea, I'd like to recommend something called Kratom, a plant from Asia. It's a powder, very inexpensive. One of the negative SE is constipation.

Some people mix the powder in water (3-5g) and drink it down. However, I would not. To avoid irritating your GI system, I would boil it in water, 20 min, strain and dispose of the powder. Drink the tea, add lemon cuz it's gross. I prefer the boiling method as it sterilizes the plant material.

---

It will make you a bit buzzed and give you energy. Effects last 3 hours ,🙂 You can totally function, work, study, etc

The white gives energy, the red makes you sleepy. It's legal in most states. About $80 for a kilo, 200 doses.

Any questions, lmk.

Eve

LoriCA

Thanks everyone. It started with the last 3-4 infusions of weekly taxol (only), each time more severe and lasting longer ( 2 days, then 4 days, then 6 days) but clearing up before the next infusion. I had a month off and was feeling good (although the problem didn't entirely go away until Week 3 of that break) before I switched to every 3 weeks and added the H&P, so 3x the dose of Taxol plus new drugs with that same SE, and again the problem started within 12 hours, the most severe and longest lasting.

Hehe beatmon I am on pain meds (fentanyl patch, morphine and gabapentin) and there have been a few times this last round that I was tempted to take more morphine for the constipation effect (went through that trouble early on)!! But seriously I have worked hard to wean myself off the morphine, down from every 4 hours to now one per day, so I don't even want to go there. I have a feeling that I'm going to need it again one day down the line and I'd rather "start from scratch" instead of my body already needing a higher dose, so I've been very strict with myself about it to. I'm on a fairly low dose of fentanyl (25 mcg) and hoping to just stick with that for the stability and get off the morphine completely for as long as possible. But still with fentanyl, morphine and gabapentin in my system you'd think they would have some effect on the problem!

Dianarose

For those of you who new Cindy Rogers her daughter wanted me to post that she passed away yesterday. She had tried several chemos over the past six months without any success. I will miss her 😢

Micmel

Dianarose~ I am sorry my sweet friend. I did not know Cindy, but I know how this hurts you, I am sorry for you and your friends family's loss. I hope you're able to see, what a good friend she found in you. I know I have. Much love ~M~

Artista964

i remember farrah fawcett went to germany for cancer tx. Didn't work obviously. Some alternative thing. I guess if you want to try something else. If there was something shown just as effective with a large sample it'd be here too.

Anonymous

I agree, Micmel, you said "We go through it one way or another once diagnosed. It's like Iiving in a haunted life, scared all the time. Fear becomes present everyday, every ache. Every pain. It's just the way it is!" Seven years later, I am still here and I was one who started w a myriad of alternative choices, costly. They helped, but I still needed help and turned to a like-minded oncologist and hormone control which helped. Still using alternatives / complementary too. For me, as bad as this has been sometimes, I still feel I made the best choices for me so far.

On the subject of assisted "suicide" for lack of a better word - I have never known what I think or would do. Once I read a person's opinion in that the leaving before the actual natural death would be taking away from other's their experience of connection to us and what that experience of connection offers the world. Ripple effect and all. Even if it is the bathing and gentle caring of the person nearing death. Or sitting to read to them. And I agree with that. Then I also understand too well the pain scale of 1 to 10 and how bad it can get, so what if that pain is not managed, what to do then? And I don't know.

For diarrhea, apple pectin capsules may be a natural alternative. Take a cap every 6 hours maybe then slow down. Then as needed. Very effective, for me anyway.

Micmel

ok this is for some of our oncs!!!!!! Or people who just don't listen and go on and on and on about cancer that they don't have and don't understand a damn part of it. !!!

marijen

I think they should try the drugs they give us and then STFU

kathindc

And have some of the procedures they put us through. Particularly the ones they saydon't hurt but they do for you.

Dianarose

one of my friends try to find her car this morning. We got over two feet of snow man poop! I want spring

Egads007

Couple of questions for the Steamies:

1. Is this still the place to rant?

2. Is cussing allowed? *sound of screeching brakes* Never mind.....finally saw it was allowed in the rules. I'm an idiot.

3. Why am I so anal retentive about listing things? No answer to this required.

Thank you!