Lung Cancer second time, No Treatment wanted, sort of

[Grumpy-One-Lung]

Dean, Shelly and all of the others with Lung Cancer

I think you (Dean) are the answer to what so many of us (Lung Cancer, or other cancers) are looking for in this world. You see the entire picture and can understand just what it is that life is all about, (quality of ones life). I for one understand it (You) totally. (at my age of 65 +).

But Please, Please, before reading this, I must tell you that I know a lot of folks that have cancer, had cancer and are doing real well on radiation and chemo. So this is not something that most would follow, (meaning my own personal choices in this matter). One friend of mine, I worked with him for 30 years, has been battling lung cancer (asbestoses) since 1989. In his case he has had both radiation and chemo for this entire time span, he is doing very good considering what he has been through. He is the most loving, caring person I have ever know in my life outside of my family(s).

I am in the same boat (Lung Cancer) and I was told Monday (Mar: 22-2004) that the cancer has returned. It is in my right lung and liver, (left lung removed Nov: 25 2002).

I did go through the radiation treatments because of my family insisting on it, the family thought it was a cure all. They (doctors) did every thing they could to end my Quality of life with their radiation. They also put me down as a person and I was told that I was a 50 year smoker so I was at fault. The radiation doctor refused to talk to me at the time about anything because I refused Chemo right up front at the start. So I had to contend with my cancer, with a hateful doctor and my fears of the un-known at the start. But I did over come all of that, I got better then anyone (doctors and/or family) could have thought I would or could. I can do most anything I did before, I am not sick, I am not down, I am doing very good, But I have Cancer, LOL.

Now this returning cancer is another deal for me. I will be talking with the chemo doctor tomorrow (Mar: 25 2004) and that is when I will make up my mind as to what is next. Chemo is out of the question for me, but he may come up with other options, time will tell I think.

My out look on this entire ordeal is that my body is so out of wack with what is normal in the first place and that I can’t seem to get that/it across to the doctors. They (doctors) use statistics to explain the reasoning behind what they want to do to me and what they say will be the end result. As you said (Dean) this could take hours to explain, but not hear nor now. Just leave it to say I am (my body) very different then most folks. The doctors I have had to deal with refuse to consider anything I say on this matter, bummer.

Oh yes, I did all of the research on the treatments (with a lot of help from my cousin Anne) and it all comes down to the quality of life issue for me. Being burned from the inside out was an ordeal in it’s self (radiation), but chemo is the last word in a total loss of quality of life to me.

In answer to others, I am at total peace with my self, bar nothing else, so I fear nothing, I am ready for what ever comes next. I am ready to go meet my maker when the time comes and he calls me. If there should be pain towards the end, then that is my choice and I will deal with it easily as I have tried to do throughout my life. You did such a good job of explaining your feelings (Dean) I wish I could do as well. But here is my story, as told be me, for me and….

My family is not behind me in this at all. They look at it as wanting more of my time here on earth and to help them grow over time. But chemo would end all of that for me, so I am doing it my way, what ever that turns out to be. I do love them all dearly, my wife of 43 years, my 4 sons and one daughter, my 10 grandchildren and 3 great grandchildren, but being poisoned is not an option for me.

All of my Prayers, Hugs, Feelings and Best Wishes to One and All

Grumpy One Lung (from Michigan)

[Angie Daughter of Bill]

So sorry you are having to deal with this again. At first, my Dad said absolutely, positively, NO CHEMO. I did not try to sway his decision either way. That, to me, is a very personal choice. Dad thought chemo would be sickness the whole time. Well, Dad changed his mind. He is in his second round of carbo/taxol. He has not been sick AT ALL!! He is amazing. The only side effect he has had is some bone pain in his legs and lower back. (not even enough for pain meds) I did get his oncologist to write a Rx for pain meds this time, just in case it gets worse. His treatments are on Tuesdays. The bone pain hits on Friday and is gone by Saturday night.

I am not trying to sway your decision.....as I said that, to me, is a very personal choice. I just wanted to give you a "good" chemo story. Now, whether the chemo is working or no??? We won't know that for about 3 more weeks.

I wish you the very best with whatever you decide to do. I hope that your family can accept your decision, regardless of what you decide. It was hard to think that my Dad wouldn't do chemo when the doctors said it was his ONLY chance, BUT I respected his thoughts, just as I respect his decision to go ahead with chemo.

Angie

[shelliemacs]

Dear Grumpy,

I totally support your decision. I have now accepted my fathers decision as well to end his treatment. He does not want to be sick again either (from the chemo) and after a heart breaking battle within myself I accept that. No I do not want my father to give in and die. I just lost mom to Lung cancer in AUgust of 2003 and in my early 30's to be without any parents is so very sad to me. It aches deep down to know that when I look at my father now, it could potentially be the last day I see him due to a disease. I know no one is gauranteed to come home tonight or see tomorrow morning. I just hate the thought of loosing both of them so close together.

I thank you as well for your internal feelings. It helps to know that maybe my dad has some of those as well. I just dont want him to hurt or be so terrified at those last moments. Helplessness towards our loved ones suffering is at the least horrible and I would do anything I could to stop it.

[DeanCarl]

Grumpy,

First off know this ... no matter what you decide there will be folks who support your decision and folks that don't. When I was going through the dx phase of all this I was dealing with 5 different doctors (G.P., Chemo-onc, Radiation-onc, Pulminary and Thorasic Surgon). I was lucky. 4 out of the 5 treated me with complete respect and dignity and not only accepted my choice but did everything in their power to support it (giving me options for palative treatment, getting me on hospice, fighting to get my scooter, etc). I only had the one (the chemo-onc) who was a jerk and I've been handling jerks for a lot of years (as he found out in a flat hurry! )

The two members of my family who live in this area (my daughter from a previous marriage and my wife) had a lot of trouble with all this at first but have come around as time has gone on. Oh, I know they are still pretty unhappy but that's COMPLETELY understandable. What they HAVE done is to realize and accept that this IS my decision to make ... and mine alone. I think part of what has helped there is that *I* have tried to be as understanding as possible about what THEY are going through while at the same time maintaining my control over my own choices.

My former co-workers (a very tight knit goup) are mostly supportive with one glarring exception. One guy is adamant that I have "given up" and should be in there fighting for every minute of life no matter what the quality. I've delt with that by realizing he is reacting to his own fears. Our carreer paths are very similar and, yes, he is a smoker.

There are folks here who have chosen to fight this disease every step of the way with incredable courage and determination. I would give all that I own to see every one of them cured right now. Others have lost loved ones to this illness. Having been there (my Mom died of lung cancer a little over 5 years ago after beating it twice) I know their pain and would take it away if I could. And then there are those of us who've chosen THIS path. I asked for this forum to be started to show folks that this choice is just as "deserving" as any other. That it is not, and never should be, a "compitition" between one choice or another. That it's not about "giving up" on life but simply a different way of LIVING life.

If I can bring anything to this "table" we all sit at it would be to show folks that every one of us is different ... and every one of us is the same. We are different in age, gender, beliefs, economic status. We each are in different life situations and have had different experiences that affect our views on life ... and death. But we ALL deal every day with the same disease. We ALL feel the same feelings of fear, saddness and, hopefully, joy and love. And after we've reached into our hearts and have made the decisions we've needed to make we ALL need as much support and love as we can get to do whatever we need to do.

Grumpy, no matter what your choices might be in the coming weeks, please know thay you have MY complete and unequivical support.

Dean

[Frank Lamb]

HI GRUMPY,I'm sure your family wants you to keep fighting cause they love you.I respect your thoughts and I'm sure in time they will too.However just a thought.Not every one gets real sick with chemo-They have other meds can be given to minimumize side affects.And if it doesn't work out that way YOU CAN ALWAYS QUIT THE DARN STUFF AT ANY TIME YOU WANT.However you do choose my thoughts and prayers are with you.

[gerbil runner]

Grumpy - those dr.'s should hang their heads in shame. There isn't a human being alive who doesn't take risks from time to time. That's apart from the issues of addiction!

Chemo and radiation are so tough...your family probably doesn't really understand how horrid it can be for the person doing it. All they know is they aren't ready to let you go.

I hope that, in time, your family will accept your decision.

[Elaine]

Grumpy.

I wonder if a change in Doctors would help you, regardless of what choice you end up making. I had my initial DRs say and do some incredibly mean things to me, which made me feel really bad as if I didn't feel bad enough already.

I am not trying to talk you into treatment, I chose no treatment and one of the main reasons, I have come to figure out, had to do with the fact that I did not want to be treated as a second class person by the very people who were supposed to be giving me care and treatment. It was too humiliating .

I am now in some counseling and I am finding out that a lot of my reasons for not seeking treatment were based not on what was best for me or anyone but what I THOUGHT was best for me and everyone. I am in the process of trying to sort that out.

I don't know the specifics of what you mean by the way your body reacts, but it may be possible to find someone who will listen. I don't know. I haven't found that yet myself, but some people on the board have found that kind of medical team.

Maybe it makes a difference if they think they can cure a person, but I don't know. I would think ALL people, those with the scientific odds of some cure AND those without, should be treated with respect, consideration and empathy.

I guess I am no one to offer advice. But maybe if you had a better medical team, you would think differently.

Elaine

[SandyS]

Grumpy -

I hope your family will come around and find it in their hearts to accept your decisions.

(And I gotta vote with some of the others that maybe you could give the chemo a try - it's not always bad - and you can always quit.)

But whatever your decision - may you enjoy each and every day!

Hugs and prayers,

SandyS

[Z_Pacific]

HI Grumpy-One-Lung,

I am right in there with you, except I have not opted for any treatment since the cancer was dx one year ago this month. Have a few side effects but nothing that can’t be treated with some pain meds and positive attitude.

As I am sure all of us will agree that your attitude dictates a great deal on how your body is feeling. You can feel really bad, (which I do many mornings) but if you get your head in the right place it seems that the body tries and follow.

Hang in there and my God Bless,

Howard

[Mark67]

Grumpy-One-Lung

I understand what your saying, actually maybe I don't because I've never had cancer or ever had to go through treatment so maybe its easy for me to say but I believe that everyone goes through the same amount of pain when they die. If you get hit by a car and don't even see it coming then there would be no pain for you but you family will have lots of questions and will mourn so they will be the ones to absorb all the pain that you didn't have, Or on the other hand if you are fighting a disease and it goes on for years or months with lots of pain it makes it a lot easier for the family because they just want the pain to stop and you are the one absorbing the pain but in the end the same amount of pain will be present. So what it comes down to is if you believe in my theory who would you rather feel the pain. And you just never know there are many people out there that overcome this. So If you have made up your mind than thats fine but think of everyone else to, everyday makes a difference, if my mother who lost her battle to lung cancer would have gave up she wouldn't have been present for my wedding, Which would have made it a lot harder on me to except but because she fought so brave and so strong everyone who loved her felt a little less pain. So never give up there is possibility of quality and quantity but its not something that comes easily its something you and your family have to fight for. But good luck in any decision you make I'll be praying for you.

"where there is a Will there's a way"

Mark

[Elaine]

Mark,

Thanks for the theory on pain. There have been days I wished for the getting run over by a truck instead of this, thinking that would be easier on my family. But you have given me something to think about. Thanks.

elaine

[Snowflake]

Elaine,

You STILL need to look both ways before crossing any streets! Those darn beer trucks...

[Connie B]

God Bless you Grumpy One Lunger,

I totally respect YOUR decision. It's not an easy one to make, but it's YOURS and YOU my friend have earned the right to choose.

I know being a one lunger myself I have thought what if it comes back, what are my chances? I have talked to my doc's about this already and I hate to say the outcome isn't the best for us one lungers. So, I have pretty much made up my mind already and I don't even have to do that YET!!! Who knows, maybe I'll change my miind, but after all I've been through over the last 9 with my cancer, and the loss of my son, and two open heart surgeries within 10 weeks time, I think I've had enough.

Time will tell. I may die of a heart attack and then I'll never know what my decision would have been.

God Bless with a Warm and Gentle Hug,

Connie B.