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How would you know?


KatieB

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My mom kinda took this path...but not exactly. She chose to treat to eleviate symtoms, but not to prolong her life.

That said, I told my mom when she was trying to decide what she wanted to do that when she does decide I will break down, and it is not because I disagree with the choice, it's because any choice is going to suck and I don't want her to have to make this decision. Sure enough, when mom told me she wouldn't do chemo, I broke down...but she knew my reaction was not out of disagreement, it was just sadness.

I would say respect the way your loved one wants to live. And how may impact how long, but it is his/her life.

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Do you think you would know when to take the path less travelled?

My personal experiences weigh into this heavily. Having experienced Brad’s 3 months of hell with absolutely no treatment doing anything but making him sicker and sicker until he physically and mentally could not take it any longer, I accepted his decision to stop seeking help and to make the pain end.

Then I went through the nightmare a second time with my step dad. Mom and I stood by him in every decision he made. We made sure he had the information he needed in order to make educated and informed decisions and he did exactly that. When the cancer was found to have spread throughout his body, the doctors told him that Tarceva would be the best and only chemo option. Jerry consulted with the Hospice services representative and made the decision to go home under Hospice care. It was most definitely an issue of making and keeping him as pain free as possible.

Given both of my experiences, I would have to say that, yes, I do think I would know when to take the Path Less Traveled. It would not be an easy decision for many people to make or accept but knowing that treatments were no longer working and that there were no other feasible options left, it would be time to stop treating the disease and doing all the possible things to live each remaining day to its fullest and as pain free as possible.

What advice could you give to family members whos loved ones are choosing to take the path less travelled?

The best advice I can offer to the family members and friends of someone who has reached the point of taking the Path Less Traveled would be not to try and discourage the patient or change his/her mind. This is not an easy decision to make and as long as the person has reached this choice through an informed manner, then support them and accept that this is how they choose to continue their journey. It is not easy and for that reason most if not all Hospice organizations do offer support services to family and friends of the patient. Speaking from my own experiences once again, these support services are invaluable!

I do believe that the MOST IMPORTANT thing in all of this remains to support the decision and be there to love and care for the duration in what ever way you can.

Warmly

Christine

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In my Moms case, she was told that she had no options left. When I asked her if she would consider looking into clinical trials she was absolutely sure that she didn't want to do that, basically she had had enough with treatment and going to doctors and didn't want to fight any more, especially if the outcome was uncertain. We all completely support and understand her decision, although we are very sad... At this point our priority is for her to be as comfortable as possible with the help of the hospice group.

Rana

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In our case, I think I instinctively knew, even before Larry came to terms with it. He was such a fighter. It took him awhile to understand that it wasn't a sign of weakness to take off the boxing gloves and let things be.

At the end, Larry was offered a new chemo regimen. We had an appointment set up to discuss what it would be. That morning, Larry said he was too tired to go, please reschedule for "later today". Then "later today", he was still too tired. So the receptionist and I arranged for me to call her when and if Larry was ready. I never made the call.

I reminded Larry for a few more days that I would make the appointment whenever he was ready. Not yet. And I could see he was past that, but he never said straight out that he was done. I guess the only reason I even asked him about it is because I didn't want to influence his decision one way or the other. It didn't matter what I thought. I was in for the long haul, regardless.

He lived for another month after discontinuing treatment. I feel certain that if he had pursued another chemo, it would have shortened his life. And I'm so grateful for that last month with him. We made memories.

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  • 1 month later...

When I was first diagnosed (in 01/07), I deliberately chose the most aggressive treatment available (concurrent chemo and radiation therapy)--not because I was seeking remission but just to try and buy time (my prognosis without tx was 13 mos.; with aggressive tx, 13-36 mos.)

I almost died a half dozen times during those three months, but each time I managed to bounce back and even though I was unable to complete the treatment (30 of 33 radiation & 15 of 18 chemos), I did manage to buy a few more months before my cancer began growing again (in 12/07--see My Story (link below) for more details).

I wouldn't change that initial decision, but after I'd bought the time--and spent it wisely--as more and more decisions needed to be made, I developed a simple philosophy: I would try to buy time only if it was going to be quality time.

Thus, when I had to make a decision last June as to whether or not to continue trying treatments, the decision to halt was easy (10% chance of success, 90% chance of severe side effects).

To me, balancing buying time and quality of life was a simple, logical decision, but I do know how very fortunate I am to still be alive--and pain-free. I have treasured each and every day since my diagnosis, but I am also ready to go... with no regrets whatsoever.

With love and affection,

Carole

Life is not measured by the number of breaths we take, but by the moments that take our breath away.--George Carlin

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  • 2 weeks later...

For some unknown reason, I just knew when it was time to call Dennis' doctor and let him know Dennis couldn't go through anymore. That was the day hospice was called and Dennis lived for two weeks after that point. I don't know how I knew that day was the right one to call...I just knew. I have to believe I had lots of help from above in making a decision to make that call.

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I just realized I'd never replied to any of you after my posting here. Thank you all for the kind words and good wishes, and the same to you, of course.

The good news is I'm still here and still pretty much pain free. I am definitely weaker, but my WONDERFUL hospice doctor keeps coming up with "comfort care" remedies that keep me going. I was down in bed all weekend (and most of the holidays), but that was due to additional prednisone adjustment needed, and on Monday, I was able to drive myself to my Vitamin C infusion, and on Tuesday, I was able to water my indoor plants myself (all 20-30 of them) so no complaints at all from WINDY Boulder this week (gusting to 80 this afternoon!)

I hope you all had a happy holiday and to Dennis' wife: I've come to think that quite often what seems to be a "gut reaction" is much more than that: it's actually the result of your brain having been processing on a daily (even hourly) basis which means your decision was probably a lot more thought out than you realized. It was certainly a caring decision and made in his best interests, and that's what counts in both the long run and the short.

Affectionately,

Carole

Life is not measured by the number of breaths we take, but by the moments that take our breath away.--George Carlin

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I've sure been thinking about you Carole. I'm glad to know you're still pain free and I hope you have a lot of support surrounding you right now.

My prayers will continue for you. Thank you for posting your update. Don't forget all of us are here for you.

(((hug)))

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Hi Katie. Somehow I missed this thread when you first posted the question and have only just found it. Sorry. I don't know if the question is still relevant for you but here's my answer.

When I first read your initial post, I wasn't sure what 'the path less traveled' was a euphemism for -- not taking treatment or committing suicide. I'd heard it used for both in the past. In any event, I chose the no-treatment path from the beginning. I can tell you that, while my husband has understood my position from day one and has been totally supportive, most friends and relatives were horrified at my refusal to do chemo/rad, and dealing with their rants was quite a pain in the you-know-what. I suspect that at least some of them were doing what they thought was 'supportive' by demonstrating hysteria at my in-your-face mortality but educating them on lc statistics was really not how I wanted to spend my time. Fortunately, they've shut up by now. :)

As for the other sense of 'the road less traveled', I fully intend to end my life before I lose my independence and have checked out the various methods and have made all the preparations -- but I've learned to be careful about who I tell that to! :wink: Again, my husband understands completely and is ok with it, for which I am very grateful.

Sooooooo, my advice to loved ones is to support the person's decisions and, if you can't, at least hold your tongue.

Ellen

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Ellen:

I have to confess that I have a "stash" just in case, but am hopeful I won't need to use it based on discussions with my hospice team regarding my final weeks.

None of us can know for sure ahead of time just how it will go. I think I have all bases covered, but if not, I guess I'll just play it by ear.

In the meantime, my only treatments are naturopathic and they seem to have greatly slowed down both growth of pre-existing and new metastases so in the meantime, I continue to follow doctor's orders; i.e., my onc told me back in April: "I don't know what you're doing right, but don't stop!" :D

Affectionately,

Carole

Life is not measured by the number of breaths we take, but by the moments that take our breath away.--George Carlin

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Ellen/Carole

I am just in awe of your strength and courage. Where ever the "path" goes, I hope it is always in peace and comfort.

My prayers continue for you both.

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Carole, I too admire your courage. It's good to see you back on the site. I hope you continue to enjoy quality of life--and being able to tend your flowers definitely qualifies.

Ellen, you are remarkable and I am so glad those people finally shut up. I missed out talking to a good friend before he died because I suspected he would argue strongly for no treatment and I didn't want to disappoint him. I'm not sorry I did the first 6 rounds of chemo but I am sorry I stayed on Avastin so long. The horrible muscle and bone pain is subsiding after 2 1/2 mos (Ned said 2-3 months) but I am still experiencing bruising and bleeding and slow healing from minor scrapes and bumps. My husband said he doesn't think my energy level will ever be what it was. I might make different choices if my cancer recurs.

Judy in Key West

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You're all so brave and strong. Carole and Ellen, I am admire your ethics, your courage and your resolve. The lawyer in me wants to remind you that we never have as much control over what we put out on the internet as we think we do, so be careful. The daughter of a cancer sufferer (and, yes, I know there are more positive terms for it but right now she's just suffering) in me hopes and prays my mother can make self-loving and sound decisions the way that both of you have, whatever her ultimate decisions may be.

Love to you both and Katie, as usual, merely starting this thread shows how insightful you are into the needs of the people here.

xo

bunny

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I thank you all for both your input and your kind words, but as Judy and I have discussed in the past, the truth is that none of us know how brave we'll be when the time comes, nor even how we'll define bravery (courage, etc.) at that time.

As our disease (or the side effects of treatment) progresses, words and phrases take on entirely new definitions, and and we find our lives adjusting to the "new normal."

I also suspect that for each of us, the phrase "path less travelled" has a meaning of its own. Unlike Ellen, initially I chose the most aggressive possible treatment (concurrent radiation and chemotherapy), and even though the side effects from that choice debilitated me greatly, I still believe I made the right decision in that I was able to buy time that was "quality" (based on my new definition of "quality of life"). "

Likewise, when I made the choice last June to cease further standard treatments (chemo), it was because any time that I bought, would not be quality time, and again I feel like I made the right decision (more so each passing day, in fact).

But if someone had told me two years ago today (the 2nd anniversary of my dx is tomorrow) what my life would be like, I suspect I would have assumed then that a "jockette" like myself couldn't take it--that I'd either just lie down and die by force of will or kill myself.

I have learned so much in the past two years, not just about myself and those around me (both old friends and new), but about life and living in general. My entire world was turned upside down, but I no longer feel as if that's a bad thing. Instead, I feel as if I have grown immeasurably as a person and that my ability to love has become infinite.

Others who have known me for a long time (some for a lifetime) don't seem to sense the change in me as much as I do, so I don't know if it's simply that I'm more introspective now or if I was a better actor then (and perhaps still?), but either way, I have come to treasure this time, especially for the many new friends I've made--both here and locally--as a result of my diagnosis.

My love to all,

Carole

Life is not measured by the number of breaths we take, but by the moments that take our breath away.--George Carlin

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Hi folks.

Thank you, Bunny, for the legal advice. I'm very aware of the dangers to those around me and fully intend to make it clear that they'll have had no part in whatever happens to me. But thanks for reminding me. Hopefully, the day will come when these cautions won't be necessary, as they are already not necessary in the Netherlands, Belgium, and Switzerland, and Washington and now California.

And thanks to all who showered compliments on me. But I must take issue with the 'courage' compliments -- courage is a very subjective thing, depending for each person on what that person fears most. My over-riding fear is loss of control over my life and person. On the other hand, I have no fear of death -- as I see it, we simply cease to exist, as we didn't exist for the billions of years the universe was around before we were born. (And that wasn't too hard, now was it? :lol: ) So I wouldn't say my 'less traveled path' is a sign of courage; on the contrary, it's the only path I could be comfortable with, given the situation and my personality.

Peace.

Ellen

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Ellen:

You wrote two key things that I can relate to (pardon dangling infinitive):

1. Control: Much of what I've done in the way of arrangements has centered around my being able to control my exit--not the timing, but the manner. Examples would include my completion of the "Five Wishes" form (which includes voluntary withdrawal from food and nutrition and palliative sedation to the extent legally allowable), signing a DNR, signing up with Science Care Foundation (remains for research/med school), deciding I want my final days to be at the hospice care center (rather than at home or in hospital), and insisting I be allowed to reign as a "Morphine Queen" at the end (dying peacefully with grace and dignity vs. groaning, moaning and whining).

2. Lack of fear of death: Like you, I seem to have none. I don't know why other than my belief that dying is as natural as being born--simply a normal part of the progression--but whatever the reason I'm comfortable with whatever the future may bring, including a more immediate death.

In the meantime, my best wishes to both of us. :)

Affectionately,

Carole

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