how.....

[shelliemacs]

how do I accept my dads decision to discontinue his treatment? I understand it....I know its his life and his decision and that he is the one taking the poison into his veins....I know its him who doesn't want to be sick daily or feel awful from radiation...

but how?? how do I come to terms with it. How do I accept that the road my father is on will now lead to his death. How do I prepare myself for yet another parental funeral and say goodbye again....

this week has been just awful.. Sunday would have been moms birthday and its killing me that she isn't here... I am so mad at her for dying and leaving me. Dad can't see any reason to go on since mom died and I know thats a part of his decision to stop treatment.

I sound selfish I know, but I just can't help it....I am so sad, scared, down, and mad all at once.

someone give me some direction.....

[DeanCarl]

Shellie,

I'm sorry you are going through all this pain. I wish, as I've said, I had a magic wand to wave to make things better for all of us.

As you know I've been on both sides of this. Not only do I have this disease but my Mom died from it about 6 years ago. She had beaten the beast back twice but just didn't have the energy to go after it the third time.

I guess one of the things I learned was that "acceptance" is NOT the same as "agreeing" or "liking". For instance, I have come to a place of acceptance that all living things must die. It is part of the price living things pay for being alive. I may not like it, but I can not deny it.

There's not a lot more I can say here. Gay is at a doctor's appointment right now and I'll let her know about this post when she gets home. Maybe she will have some more insite for you.

Dean

[mhutch1366]

Shelly,

My heart goes out to you.

None of us are going to live forever. Your dad is choosing his terms. See Fay A's note about I WIN.

He isn't thinking of you first here, hon.

After all, he's been there and done that already with the chemo.

I would choke on that too, but it is his body, and the rest of us have to accept that one has the right to make the decision for onesself.

All that you can do is gather us around you for support... and you just have to reach out to us, you know that.... and pray for acceptance.... and enjoy every day that you can.

Sometimes life sucks, and it just isn't fair.

But that's life.

(((((((((((((((((((((Shelly))))))))))))))))))))

I'll be thinking about you.

You and your dad are in my prayers.

XOXOX

MaryAnn

[Snowflake]

Shelly,

Many of us when faced with the decisions involved in cancer, take a look at our life and our family and decide to "fight it out" because our family NEEDS us. Some of us decide to NOT fight it out medically due to quality vs. quantity...

Younger people want their parents to survive and the older patients want to stay around for their kids....spouses want to hang around for their spouse, parents for children, etc...

...and then there's your dad. He watched what this disease did to your mother - your mother who had a loving husband to live for. Your father has lost his main reason to carry on when he lost your mother. I think he truly believes that the cancer is a way for him to reach HIS final goal, to spend eternity with the one he loves and he does not want to prolong that time. I know that has to be devastating for you as it seems that YOU are not as important to your father as your mother....

...and from your dad's side, his babies are grown with babies of their own, they don't NEED him, they can make it on their own. He's no longer raising children, the relationship has changed in that he makes SUGGESTIONS and doles out love to grandchildren and his adult children...but he may feel there is no need for him any longer here and what he WANTS more than anything is to be "back" to the way it was, him and your mother as a team, together...

I know it has to hurt, to feel that he has given up, but he hasn't. He hasn't given up on his WIFE, and that's where he wants to be. What a testament to their love....

Wish I could make it all better for you, ease that anger and hurt, wave that magic wand, close that closet door on the monster in there, vacuum up that monster under the bed...but I can't. All I can do is offer you an ear and a shoulder and my wish that things go the best that they can.

Take care, Shelly,

Becky

[Andrea B.]

Dear Shelly,

I am so very sorry for the heartache you are enduring. I wish I had the words to make it better for you. It is so hard when we have no control over our loved ones decisions. All we want is for them to stay with us and to love them. But ultimately it is their decision. My heart aches for you and all the you have gone through. I think of you all the time and please know I am here for you. I wish I had the words...

Hugs to you.

[cathy]

Dear Shelly,

If only I could relive the days when my dad was diagnosed.. He decided he wasnt going to get any treatment after the surgery, well when we heard that we had a big family meeting and told my dad he had to have it, because that was the only way he would be around for us and we needed him. He agreed with hesitation but did it for us and that was his only reason. I can still see and hear us that day, all the crying all the pleading, so much pain in remembering that we his loving family talked him into the very thing that lead to his passing...He was doing so good after surgery, once he started radiation the nightmare began. My point is Shelly, let your dad do it his way, he needs you to support his decision. I think he is feeling enough is enough, he's tired. You have so much grief in your life right now, you dont need to add guilt to it, trust me its horrible...At least when the end comes and I say when because no none knows you will be at peace because your dad did exactly what he wanted.. I am not sure if I will ever find that peace...God Bless you Shelly

[shelliemacs]

ok, everything you all said has given me much needed comfort. I really appreciate it. I have to get a handle on it and thats that.

now my question...

how do those of you who have decided to stop treatment or not seek treatment come to your decision. I know I am not wording this wright but what factors made you make these deciosions.. was it quality of life, was it not wanting to be sick, was it you fealt you were old enough, was it depression. I mean how did you make such a BIG decision that will lead to the ultimate formality and stick with it.

I know I am not nearly that brave that I could make such a choice. I am just trying to understand where dads head is. I dont understand the mental issues a cancer patient feels so I cant begin to understand what steps he is making to get to this decision as well as you who have made this decision.

I don't mean to sound crass if thats how I am coming off, I am just trying to understand really where he is at and if he is at peace with this decision.

[Elaine]

Shellie,

Wow, we must be connected. I was just about to write a post asking the same question--for insight into the mind of Dean and Howard (Z-Pacific). I was a bit afraid it was asking too much, but I hope someone responds. I also chose no treatment and I wlll write my thought process if someone else does--lol-

I guess I am challenging Dean--. No, anyway I am questioning my decision. If felt right when I felt so good physically, but now that I don't I am wondering..... Maybe I was just too depressed to make that kind of decision at that time. I will think on this today and write a post for you.

Elaine

[DeanCarl]

Whew.... got a couple of hours? I think that would be how long it would take for me to explain all the factors that went into my decision. But ... here goes and I'll try to keep it short enough that it won't rival "War and Peace"

I guess I should start with this. This decision is about the most PERSONAL one I can think of. Each of us is SO different that one person's story may not have much to do with anyone else's. Given that, here's how I came to MY decision.

My decision was, and still is, based on a combination of factors. First off was an honest assesment of my disease and my chances of recovery. I was lucky enough that two out of the three doctors I was dealing with at the time were very open, honest, and forthcoming with information about my particular case. Plus I did a LOT of research on my own. This led me to an honest assesment (again) of the PRICE I'd have to pay for the chance of recovery. Again that entailed a lot of research on radiation and chemo and it's effects and what all.

Ok.... that took care of the EASY part. I now knew what my chances of recovery were and what price I would have to pay to take that chance. Now came the hard part. Given MY stituation in life, what my beliefs were about life and death, and looking back on the life I've lived was I willing to pay that price for the chance (rather small in my case) of living a bit longer.

And the answer to that was "no".

Some explinations: I have lived what some call a "full" life. I've talked with many folks my age or older who simply can not believe the amount of stuff I've done, the places I've been or the the things I've experienced. I've probably packed more living into my life than folks 30 or 40 years older than me. I've accomplished, with a few minor, exceptions, just about everything I've wanted to do in this life. I wish I could take credit for that, but I can't. Mostly I've been pretty lucky (even when I thought I wasn't being "lucky" at all! ). I've been as far "up" as a man can be and been as far "down" as a person can go and still be alive. I dined in a palace in Thailand and, a few years later, had to search dumpsters for my next meal. I've spent holidays so alone I wished I were dead and spent others surrounded by so much love it made me cry. I've been on "runs" with biker clubs (the "bad" kind) with hundreds of thundering motorcycles making the ground shake when we went by and been in places so quiet I could hear the voice of God. In the last 20 years or so I've had the opportunity to work with folks who really needed what I had to offer. I'd been allowed to make a difference in the lives of others, first working with the mentally ill homeless, then with developmentally disabled kids and adults. Even my last job as a bus driver gave me the opportunity to provide a needed service and to positivily affect the lives of others.

So, by the time I got my dx, I'd come to a place both externaly and internaly where I was ready to just "be". I'd found the person I wished to spend the rest of my life with and we'd been together over 19 years. We'd just moved to Alpine a couple of years ago and have what WE consider to be the perfect place for us. Both of us came to realize this would be the place where we would spend the rest or our lives.

Having come to that place I then got the news I had cancer and that period of research and assesment I mentioned earlier. After getting all the information I could and getting all the input I could from the folks that would be affected by my decision I took about a week of just being quiet and listening to my heart. The more I was able to get down below all the original fear and anger the more the answer FOR ME became clear. It became obvious to me that the HOW of my life was MUCH more important that the "how long" of it. I decided (and again, this is FOR ME) that I would much rather spend a year or so LIVING my life than spend that time tring to live longer. And so that is the choice I've made. Everything I do now is geared toward finding ways to LIVE my life. That's why I fought so hard for my scooter. That's why I'm so grateful to be on hospice. Those things help me live my life ... for however long my life is.

Once again I have to reiterate. This decision is based on MY situation, MY beliefs and the life I'VE lived. Others have made different choices and I can not express enough how much I respect and honour them. I have nothing but awe for those who've chosen to fight every minute of every day to cure this disease. I've been told I have a lot of courage but in my book THEY are the real heros in all this.

Elaine ... What you are going through in questioning your decision is pretty normal. I went through it, so did Howard. Know this ... it's OK to change your mind .. or to stick with your original decision. Whatever you do try to make sure it's what you WANT to do, based on what is in your heart.

Shelly ... let you Dad know how you feel. I'm sure that is important to him. But please remember the decision HAS to be his. I hope you come to a place of acceptance WHATEVER he decides.

Welp, turned into "War and Peace" after all but I hope it helped.

Dean

[shelliemacs]

Dean,

I thank you, it really helps allot to know the "backings" per say behind the decision.

now...please forgive me for this but its nagging me....

Aren't you petrified??? and if "yes" how do you deal with the fear. Fear of pain, fear of being so sick that you know the end is near...or do you think its like just going off to sleep and waking up feeling wonderful on Rainbow Bridge and all of a sudden its all "OK' again.

If my dad is scared (mostly cause he doesn't have mom on this side with him while he is traveling through it, but rahter she's on the other side waiting for him) I want to ease his fear. I want to take it all away. I know when mom was passing (in those last hours) she kept saying her twin sisters name "mo's here) she kept saying. now my aunt maureen passed 4 years ago to the day mom died from cancer as well. and when aunt mo was dying she kept calling "mom" so we knew grandma came for her.

My great hope is that there is "Heaven" like I have been raised to believe and a loved one does come and take our hands and helps us across and takes the "fear" out of it. Maybe there is no fear at all when they come, maybe its so peaceful and wonderful that its just fear of the unknown. I hope for all our sakes thats what it is.

I want someone to come tell me what its like. I know my uncle who is a priest tells me that if i am looking for answers to those questions I will NEVER get them. but being the "need proof" kinda person I am more than spiritual makes me have doubt which also makes me feel like a poor catholic since I was always raised to just have faith and believe in him.

gosh I am rambling here,,,i hope I have made at least one bit of sense.

anyway is there fear or are you ok. is he ok

[J.C.]

Shelly,

For me what makes sense, is that we do not know what

there is after, would it be too beautiful, too many people would want

to die right now, would it be too ugly, nobody would try to live in the right way and make life miserable for others.

The decision to fight or not, is individual, a person may fight a sickness

for a while and after stop the fight for whatever reason or keep on fighting

till the end or remission.

Good luck,

J.C.

[DeanCarl]

Shelly,

I guess I'm too busy living to think much about dieing. If I have any fear at all it's the normal fear of the unknown. And then not much. I've had the attitude for years toward the unknown future that "I'll figure it out when I get there". And, thinking about it, that goes for getting sicker and whatever is in store for me. I'm just too involved with finding ways to live my life as well as I can to spend a lot of time worrying about how this is going to feel or how that is going to be.

As an example. Gay and I had planned to go to Seaport Village today. It's a little shoping and recreation place on San Diego bay. Really neat little shops and interesting places to see. But I have to take the scooter which involves a bus and trolly ride of about an hour and a half each way. Well, I woke up to find this was going to be a "low energy" day and just didn't feel up to it. We COULD have spent the day being all upset that my illness was preventing us from doing something we really liked. But we didn't. Instead we decided to go out to brunch at a really nice little place right here in Alpine instead.

Oh, I know there will be a time when I won't even be able to do that. But when that time comes I'll figure out something else I CAN do instead.

So I guess the answer to your fear question is "no". I just don't seem to be too afraid of what the future might hold. Too busy taking care of today.

I can't even begin to answer the other questions you have. I have no hard facts, just what I know to be true in my own heart. I KNOW, somehow, that something exists for us after our journey here is done. But nobody's come back with a hotel and resturaunt review from there, so I'm in the same boat as everybody else when it comes to what that place is like. Like I said, I'll figure it out when I get there.

In the meantime there's a GREAT country omelett waiting for me and I'm gonna get to it!

Dean

[shelliemacs]

Thank you Dean. Thank you so much. You have given me allot of peace today.. I do accept dads decision.. Yes I will miss him with my whole heart just like with mom but I know he'll be happier when he is with her.

Thank you Maryann, thank you Fay, you really said some things I needed to hear. Thank you Kathy for the advice, it made me open my eyes to my own selfishness. Thank you Becky for the dead on accurate read of my dad. Andrea your in your own hell yet you took the time to comfort me, thank you. Elaine and JC, I admire the strength you have for battling the way you do through this evil foe.

thank you all. I will be there for dad and hold his hand till mom takes it from me.

[cathy]

Shelly,

I am so happy for you as I sit here with tears in my eyes, it sounds like you are truly finding peace with your dads decision.