The Colon Club

Although I'm still looking at options, I'm still feeling I don't want my ONC to keep me alive just so I don't die. I want to live my life, not just exist. A dear neighbor of mine made a courageous choice today. She has been fighting a lung illness for over the past year. Her lungs were only at 20% capacity, and she needed oxygen to live. She decided that was no life for her. So, she picked a day to die. She told all of us who loved her of her plans. We all got to say our goodbyes. Then, when she decided, they gave her lots of morphine and eventually turned off the oxygen. She was so ready to leave this life and start her eternal life. I have another friend, who has ALS and has chosen to stay on a ventilator in order to live. It's been a tough 17 years, but she enjoys all that life has to offer, even though she is paralyzed and has to use a computer to communicate. These are two special women in my life who have made two completely different choices. It has taken a mass of strength to make their decisions. I don't know which way I will decide - more chemo/surgery/radiation, or no more treatment. But I do know whatever I decide, I will find strength through my friends - the ones that are here and the ones that have left this World.

I know, Ashlee, it is so hard to be put in the position of having to make these decisions. I hated it when Jake first got cancer and had to decide whether or not to undergo treatment. And I know that there will be more decisions in the future as well. We just pray to know the right path to take when the time comes.

Hi Ashlee
I was thinking about you last nite & was going to PM you as I hadnt seen you post in a while & was wondering how you were doing.
Your friends decisions were right for them & it takes great courage to make them. Yiu are in good company here with many people sharing such decisions.
I hope the road you choose to take is one that gives you a good quality of life.

Take care
D

Hi Ashley
Great topic- My dad died at the VA 20 years ago. I was responsible for pulling the plug at his request. I changed me forever, the beauty of his brightly glowing eyes while minster and I chated the lords prayer. Such peace and joy and recognition from what doctors told me was pure brain death (took me 3 weeks to pull)/ I asked VA minister if that was normal, said he only has seen the light radiate out of eyes only a few times- so went to new age christian church and have grown at peace.

I am starting to see on this topic many people getting a few years and cancer comes back. I am thinking if I survive coming surgery and bag that a few years sounds just fine at 57. I have been blessed so many ways! Taking it day by day with NO fear!

Thanks for sharing the tales of your friends. Their courage is inspirational.

My former boss of 20 years was diagnosed with ALS a couple years before my own Dx.
He was in a joystick-controlled wheelchair with feeding tubes, and his wife was an absolute rock.
While he could still talk softly, we hashed-over war stories, and the BS got around to who would be around longer.
He passed in Feb of last year after quite a fight :teary:

I don't know how my disease will progress, but I don't want the extreme nothingness of tubes.
My isster lives in Oregon where they have a right-to-die law, and she's invited me there when the time comes; I don't know if I want to burden her with that. :shrug:

Tough decisions for everybody.
Take care,
-Rick

Dear Ashley,
Your friends made decisions and in the future we will have to do it as well. I know Folfiri is very hard on us, after last infusion when I was leaving clinic, I just thought that I want to day. But when the bad days are over, I love my life again.
So Ashley try to enjoy moments now, and when time came you will know. But I am hopping that you are going to be around for a long time. You are in my preyers.
Much love,
Maria

Thanks, Ashlee, for bringing this up. It's something I know I've given a lot of thought to, as I'm sure others here have as well.

So far I haven't been tempted to call it quits, but I assume at some point, I will. Hopefully I'll have the means and the courage to do so whenever that time comes. My main concern is doing it in a way that has minimal negative impact on my loved ones. I think that's the biggest obstacle. I think a carefully monitored government-sanctioned process in a medical setting makes sense (for that reason), but I'm not sure I'd even go that route. I knew an old logger--an experienced woodsman--who was in the mid stages of Alzheimer's. One winter day he just wandered off into the woods and died of exposure. Ruled an accident, I guess. Nobody believed that, but he managed to create enough doubt and latitude in people's minds that they were able to cope with his death in ways that made them most comfortable. Pretty considerate way to check out, IMO, and in the final analysis, he died on his own terms, which is what I think everyone would prefer.

Ashlee,
I understand the feeling of being in limbo with this disease. There are times when I am fatigued and remember my type A days and think if this is life i am not sure if I want much more. There are days though when I watch the sunrise and see the plants emerging in my front yard and think life is still beautiful. Emotions are truly roller coaster like, I do believe in my heart though, like Gaelen I will truly know when it is time.
Your sister in this fight,
pollo 65

I post infrequently, but your subject was about a subject I am going thru. I have elected to do no chemo for mets to liver. I did have a failed resection. I do not suggest anyone go this route, it is such a personal choice, you have to do what you think is best for you. My first go with chemo left me with toxic damage that was chemo related, although cancer was at fault. I think I would be dead if I had made chemo my choice or at least a lot sicker.....I live a comfortable life, but I feel the anxiety of what I have chosen, so it is not for the faint of heart. The non onc drs seem to agree with my choice. This is not a choice everyone should make, only those who are ready for whatever the results are. I have lived over a year with mets to the liver, just taking each day as it comes..Good luck in your decisions, I think of all of you as real heros....

Important and interesting topic. What matters most to me is the ability to make this decision for myself, which is why I've talked quite a bit about it with my family, and I have a document that explains my preferences. I don't want my husband or kids to be faced with a difficult decision, should it come to that, with no information from me.

I've watched two people I loved dearly die peaceful deaths, and I am not afraid to die. This board has given me the hope that, should I have a recurrence, I'll still have some really good quality time left, and that makes the idea of an eventual death from cancer much easier to face. I don't think that I will want to push up to the very last minute with every possible bit of treatment I can get, because I'd trade time for freedom from chemo misery at the end.

The more we all talk about this, the better off we are. We learn to respect each other's choices and to consider our own.

beth568 wrote:Important and interesting topic.
The more we all talk about this, the better off we are. We learn to respect each other's choices and to consider our own.

Well put.

I don't want my husband or kids to be faced with a difficult decision, should it come to that, with no information from me.

As the caregiver who has been given the complete responsibility for decision-making about end-of-life issues, I agree totally with Beth's statement. I don't want to have to make those decisions without being up to date on my husband's position. I broach the subject every few months because I know that we change in our opinions regarding death. One month we may want to do everything to stay alive and the next month we may not because we have reached a peace with everything. I need to know those things in order to make an informed decision because it is not about what I want but what my husband wants. I saw how my father-in-law was at the time of his death so I don't trust living wills made out in advance. Too often what one thinks in the abstract is not how one reacts in the time of crisis.

We don't know when a crisis may occur--heart attacks, strokes, etc. can occur at any time in any person's life and for those who are on toxic drugs, the likelihood goes up substantially. I try to give examples of possible scenarios and have my husband respond to them to try to give me some idea as to how to best have his wishes carried out. Of course if he is alert and responsive if a crisis hits, then we can discuss things right at the time. But, if that is not the case and he is not able to talk, I want to carry out his wishes to the best of my ability.

Any of you ever have a "beloved" pet die at peace in your arms? When my dog Zoki gave that look "enough" I called the vet to come. One shot made her peaceful, me singing you are my sunshine The next shot stopprd her heart. Why can't humans have the same peaceful way to go!! I heard OR was the one state to this, what a terrible shame.

Also- trust is an issue with caregivers- I have friends who died and their families did not follow their wishes. One SOB killed owner dogs even tho he had money set aside and good homes for dogs. This made me look to my family who have no great love of animals,so if I know it is close will find homes and dish out animal care money early. I just don't know!

i try to talk to my husband about this topic so often but he is in complete denial that i might face choosing to stop treatment for quality of life. I have two toddlers and am still in my 20s so i really want to fight for as long as i can but folfiri is torture to me and one day i may just give up. For now i fight and just try to enjoy every good day i have to the fullest. when i am done i think i will know it and talk about it with him at that time. im just afraid he wont accept my decision. i guess i will travel that road when the time comes...

When I talked to my primary he asked if my family is ok with my decision. When I said my husband was,he said he finds he is treating the family not the patient most of time. That the family wants the patient to live, can't live with the thought of them dying. So lots of his patients keep going for their family. I can fully understand that and believe because I am older I can be more rational about my decision. It is not an easy thing at any time young or old.....we are on a interesting journey..all so different...I found it interesting that he brought it up about my family's thoughts....