Sigh...I think I have made my decision.

Hello Alan,

I will email you.

There are no cowards here, and certainly that label doesn't apply to you. Facing mortality and picking between hard choices, enduring this road, where even the lucky breaks, still leave you tired, scared, and so very changed, isn't for the faint of heart. those folks just pretend it isn't happening. You've looked straight at it and made your choice, and there's no wrong in it, it's your right. I wish you a miracle, but short of that I wish you comfort and peace, however you find them.................................Dave

abrub said:

I just composed an essay on this subject
I understand very well, and don't plan to do anything if my next scan shows more growth (as anticipated.)  Here is what I wrote:
Choices and thoughts…

We are all partners in our own care, and we each have the ultimate right to say No or to ask more questions.

It is important to ask yourself before any treatment/procedure if the intended/hoped for benefit is worth the negative aspects of the treatment. Remember that only YOU can decide what has value for your life. It is important that your doctors be clear on the side effects of a treatment, and on the options available. ASK QUESTIONS.

From my personal experience:

In 2016, I had a recurrence with a tumor on the vaginal cuff. I knew that to remove it, I would lose an unknown portion of my vagina, and I did. But I also thought to ask my surgeon to bring in a plastic surgeon so that we could address possible reconstruction issues. He was happy to bring in a Plastic Surgeon colleague who discussed what might be possible in terms of reconstruction. And yes, the plastic surgeon actively participated in my surgery.

All went well, and ultimately I was left with a functional vagina. However, I was also left with some random cancer cells – he couldn’t get them all, they were scattered through the tissue. My dr wanted me to consult with various radiologists about possible radiation therapy/brachytherapy (internal radiation). One of those drs really wanted to do brachytherapy on me, even though he hadn’t used it for appendix cancer before, in hopes that it might prevent those cells from growing.

My surgeon and I discussed the risk/benefits, and together decided against it. The area to be irradiated was very close to my bladder, and could potentially cause permanent bladder problems. In addition, my tumor type is very slow-growing. What wasn’t mentioned (but I later learned) was the high likelihood that the radiation would permanently scar my vagina so that it wouldn’t be functional again. (This was before I knew that my vagina was functional post-op, as this follow-up occurred before we were allowed to resume activity.)

All this with questionable benefit, so we opted not to go that route. My cancer did recur – a few months later, but in a new location. The brachytherapy would not have prevented my recurrence. My dr mentioned radiation as an option for the new tumor, but he was concerned at how close this was to my bowel, and a high likelihood of permanent bowel damage. After discussion, we realized that I have a very high quality of life; and we don’t know where the next recurrence will be. Radiation wasn’t worth it. I am now simply on watch and wait. My dr felt certain I wouldn’t want the radiation, but he offered it to me anyway, as it was an option that he needed to offer. He and I are very much on the same page regarding quality of life. I don’t want to spend my life within 5 minutes of a toilet.

None of us will get out of here alive. It is important that WE make our own decisions as to what we are comfortable with. Are we looking for Quality of Life or Length of Life? What is the balance point? What are we comfortable giving up in this quest to outrun cancer?

You didn't opt for radiation, but did you do any chemo or immunotherapy?

I am inspired by your decision, Alan. It was courageous and so helpful that you shared it. Quality of life is so important. We don't talk much about people who suffer greatly through chemo and/or radiation only to die. Happened to both of my parents. Then I saw my father's second wife suffer 10 years after aggressive radiation to her uterus...destroyed her bowel. 

We certainly know our own bodies best. Conventional treatment isn't for everyone.

I dont think you are a coward at all, just facing your plate realistically. I am in same situation. Blessings to you and your family.

The fact that you underwent numerous aggressive chemo and surgeries and everything else, and most especially the fact that you are coming to terms with your chosen fate shows not cowardice but bravery! I salute you.  I don't know what to say because if I were in your shoes I'd also do the same thing.  Try to be strong and beat the odds.  Keep fighting (and I don't mean it in the scientific way).  You can still survive without chemo.  Keep living.

As I'm new here, I don't know you at all. But I can say you have my deepest respect. This is a HORRIBLE disease, and you've looked it in the face and given it the middle finger. YOU have decided when you were done, not cancer. You are NOT a coward and should be fired for even saying it.

I wish you much peace and comfort in your decision, and I will be thinking of you also. I know that you didn't make this decision lightly. Be blessed and know that you have at least one stranger pulling for you.

I hate that you had to make this decision. I hate this f-cking cancer. I don’t understand it. Thank you for sharing this. You didn’t have to And I can’t imagine how it felt to actually write it down. Facing the ultimate decision, you shared your strength with us. Thank you. 

Sending you and your family love and strength to face the coming days.

k

zx10guy said:

Just to bring to everyone's

Just to bring to everyone's attention, the OP posted this last year in August.

As to the coward comment, this is what infuriates me about this whole cancer thing we all experience.  I hate the terms warrior and battle.  It brings forth situations such as this where if one decides it's time that some how they're a loser, coward, etc.  No one can judge anyone on what they feel is right for them in terms of their treatment.  The term survivor is a much better label for people like us.  Chemo affects everyone in very different ways that's why there is so much focus on individualized treatment plans.  While I went through all 12 FOLFOX6 treatments with only one where Oxali was taken out (round 11) and with around treatment 6 where the Oxal doses were reduced, I have to be honest where at about treatment 7/8, I wanted to give up.  The side effects were getting to be too much for me.

So I hope people will spread the word to not judge someone for deciding they've had enough and to cease the use of battle and warrior.

Survivor is a good word but I also don't hate battle and warrior although I think warrior is kind of overblown. But I haven't really come up with a good name for when we fight this. Journey is one that seems arrprpriate because, like many journeys, it has twists and turns and unexpected things happen and our destination may not be what we expect or hope for.

And yes, if someone decides that enough is enough they should not be condemned for it. I can't count the number of people who have said "I couldnt go through what you have" including my husband and daughter who have both stated that they'd let themselves die rather than go through what I've been through. So, really, to give up is to be human. And it's human to fight until the bitter end as well. What's right for one person isn't right for another. I've had plenty of moments when I wish I'd just not live through something. Moments when I think I can't do this anymore and I'm comforted knowing that when things get really bad we have euthanazia where I live so it's an option. I'm not scared to die but I'm terrified of suffering.

Jan