How To Cope When Treatment Is Declined

My dad was just diagnosed with stage 4 adenocarcinoma. From my understanding it is in the lung, bronchial tube, and the pleural effusion fluid was this cancer as well. 4 liters were drained and a complete collapse and hole happened. A large tube was inserted to pump out the recurring fluid and talc was used twice, working the second time. The hole closed finally with the talc (after 2 weeks of hoping it would heal on its own), and the fluid almost completely stopped. The tube was removed and my dad went home. He doesn't want to try chemo or radiation because he doesn't he wants the time he has left to be as good as it can be.

I know I have to accept his decision...but I am struggling, hoping and praying for a miracle. Can somebody out there please help me to understand. I don't want to keep asking my dad to reconsider and upset him any more than he already is. I adore my dad and I can't bear the thought of losing him.

On 4/1/2008 rick51 wrote:

What is their prognosis w/ treatment vs. without?

Do you think your father would be willing to try some of the alternative treatments mentioned by people on this board?  I would have loved to try Essiac tea and Avemar with my mother, but she wasn't interested.   I can understand why he doesn't want to go the chemo / radiation route, but I think there are other possibilities that don't have the horrible side effects.

On 4/1/2008 HeartsickDaughter wrote:

My dad was just diagnosed with stage 4 adenocarcinoma. From my understanding it is in the lung, bronchial tube, and the pleural effusion fluid was this cancer as well. 4 liters were drained and a complete collapse and hole happened. A large tube was inserted to pump out the recurring fluid and talc was used twice, working the second time. The hole closed finally with the talc (after 2 weeks of hoping it would heal on its own), and the fluid almost completely stopped. The tube was removed and my dad went home. He doesn't want to try chemo or radiation because he doesn't he wants the time he has left to be as good as it can be.

I know I have to accept his decision...but I am struggling, hoping and praying for a miracle. Can somebody out there please help me to understand. I don't want to keep asking my dad to reconsider and upset him any more than he already is. I adore my dad and I can't bear the thought of losing him.

Dear HeartSickDaughter,

There can't be too many people who will have the capacity to feel what you're feeling. I have thromocythaemia and I expect to experience the effects of this disorder, but hope that i will not suffer secondary cancers as a result of the condition.

In my time though, I have noticed that each person usually comes to relate to their death in a very personal way. Sometimes people seek out the meaning to their life and face 'death' in their inner selves, freeing themselves from the fear. Others, like myself, occasionally consider the reality from time to time - preferring to hope that they will be ok for the time being and have happiness and health.

What I believe is that your father has the right to choose his manner and attitude when considering the 'end'. I don't know how you feel about this, but it could be helpful to consider that the moment of egg/spermatozoa fusion is the beginning of the potential to 'non-exist' - the 'clock is ticking' as it were, from birth. It is morbid, I appreciate. Certainly, survival is a regular balance of forces in the world. All who have made it past the womb and into infancy are really the powerful ones. We who live and talk as adults are really very powerful (and lucky) when you consider the forces at work which can snuff life out (of course i do not believe that the universe is anything but loving, so i don't think there is a conspiracy on its part to extinguish life).

Changing our viewpoint can help us to live richly, creatively and honestly. Denial of death or sickness is of course covered in many streams of thinking: religious and pschological. I believe that the best approach may be the way of thinking that embraces the goings on of the universe: death, birth, creation and disintegration. In essence: 'how does my environment behave?' 'Is it realistic or fulfulling to me to imagine things (and dear loved ones) having no ends?'.

I must stress that I am a fine one to talk! Death of my loved ones (my wife, daughter, mother and my unborn child) terrifies me. I am still learning my own 'teachings' if you'll allow.

Your dad must reach his path and we must accomodate these ones whom we love so much. We must allow ourselves to feel the depth of love and connection for them, cry bitterly and shout to the heavens for their loss, if need be. Your father must know how much he means to you. I daresay you actually NEED him also. So his being present and fighting for his life is also his fighting for you. To be there for you.

If he has a way of coming to terms with his human life ending; if he KNOWS that he cannott survive, then I think you will agree that his dignity and respect are the most important things.

When my death comes, I wonder if it will be a slower process, affording me the time to talk and plan with my loved ones. I wonder how i will feel looking into my childrens' eyes, my wife's eyes and maybe even my mother's eyes and saying that I've come to the point where i don't want to fight anymore. I wonder if I will be able to assert my own life-sustaining treatment options. I think I would feel terrible, maybe that anything short of fighting hard and painfully is letting them down. I don't know. I hope they would understand me and support me though.

I will be happy to talk to you at any time.

Gerard

On 4/1/2008 Rosalind wrote:

Do you think your father would be willing to try some of the alternative treatments mentioned by people on this board?  I would have loved to try Essiac tea and Avemar with my mother, but she wasn't interested.   I can understand why he doesn't want to go the chemo / radiation route, but I think there are other possibilities that don't have the horrible side effects.

 

I don't know. I don't know anything about Essiac tea and Avemar because I am new to this board. I had found something about Liquid Zeolite but my and he asked his dr who knew nothing about it. If you have any info on these alternatives it would be appreciated...I think something without side effects might be something he would try.

Can you please explain to me why you understand why he doesn't want to go the chemo / radiation route. It sounds like you've already gone through this, how is your mom? 

On 4/1/2008 GerWater wrote:

 

On 4/1/2008 HeartsickDaughter wrote:

My dad was just diagnosed with stage 4 adenocarcinoma. From my understanding it is in the lung, bronchial tube, and the pleural effusion fluid was this cancer as well. 4 liters were drained and a complete collapse and hole happened. A large tube was inserted to pump out the recurring fluid and talc was used twice, working the second time. The hole closed finally with the talc (after 2 weeks of hoping it would heal on its own), and the fluid almost completely stopped. The tube was removed and my dad went home. He doesn't want to try chemo or radiation because he doesn't he wants the time he has left to be as good as it can be.

I know I have to accept his decision...but I am struggling, hoping and praying for a miracle. Can somebody out there please help me to understand. I don't want to keep asking my dad to reconsider and upset him any more than he already is. I adore my dad and I can't bear the thought of losing him.

Dear HeartSickDaughter,

There can't be too many people who will have the capacity to feel what you're feeling. I have thromocythaemia and I expect to experience the effects of this disorder, but hope that i will not suffer secondary cancers as a result of the condition.

In my time though, I have noticed that each person usually comes to relate to their death in a very personal way. Sometimes people seek out the meaning to their life and face 'death' in their inner selves, freeing themselves from the fear. Others, like myself, occasionally consider the reality from time to time - preferring to hope that they will be ok for the time being and have happiness and health.

What I believe is that your father has the right to choose his manner and attitude when considering the 'end'. I don't know how you feel about this, but it could be helpful to consider that the moment of egg/spermatozoa fusion is the beginning of the potential to 'non-exist' - the 'clock is ticking' as it were, from birth. It is morbid, I appreciate. Certainly, survival is a regular balance of forces in the world. All who have made it past the womb and into infancy are really the powerful ones. We who live and talk as adults are really very powerful (and lucky) when you consider the forces at work which can snuff life out (of course i do not believe that the universe is anything but loving, so i don't think there is a conspiracy on its part to extinguish life).

Changing our viewpoint can help us to live richly, creatively and honestly. Denial of death or sickness is of course covered in many streams of thinking: religious and pschological. I believe that the best approach may be the way of thinking that embraces the goings on of the universe: death, birth, creation and disintegration. In essence: 'how does my environment behave?' 'Is it realistic or fulfulling to me to imagine things (and dear loved ones) having no ends?'.

I must stress that I am a fine one to talk! Death of my loved ones (my wife, daughter, mother and my unborn child) terrifies me. I am still learning my own 'teachings' if you'll allow.

Your dad must reach his path and we must accomodate these ones whom we love so much. We must allow ourselves to feel the depth of love and connection for them, cry bitterly and shout to the heavens for their loss, if need be. Your father must know how much he means to you. I daresay you actually NEED him also. So his being present and fighting for his life is also his fighting for you. To be there for you.

If he has a way of coming to terms with his human life ending; if he KNOWS that he cannott survive, then I think you will agree that his dignity and respect are the most important things.

When my death comes, I wonder if it will be a slower process, affording me the time to talk and plan with my loved ones. I wonder how i will feel looking into my childrens' eyes, my wife's eyes and maybe even my mother's eyes and saying that I've come to the point where i don't want to fight anymore. I wonder if I will be able to assert my own life-sustaining treatment options. I think I would feel terrible, maybe that anything short of fighting hard and painfully is letting them down. I don't know. I hope they would understand me and support me though.

I will be happy to talk to you at any time.

Gerard

Gerard,

Thank you so much for taking the time to write. I have read this several times before I could respond. What you say makes sense in my head...it is my heart that doesn't want to listen. And you are right, if he fought this with treatment..who would he be fighting for. Selfishly I want him to fight. I don't want to lose him. It was hard enough when he retired and moved 700 miles away. I didn't understand that- but I did support him because all I truly want is for my dad to be happy and financially it was what he felt he needed to do. This is much harder to accept. Yes, I am being selfish because I want him to fight. I need a miracle, I need the cancer to disappear, I NEED MY DAD!!!  It is always so hard to say goodbye each time it was just a visit... now I have to deal with each time I say goodbye it could be the last time. I' m sorry... I have to go..I can't write anymore now.  Thank you for your time, I'm not familiar with the your illness but I will pray for you and your family. I already know just by your post that you are a wonderful, caring individual and I am sorry you are dealing with it. Best of luck and I hope that the time doesn't have to come for decades when you find yourself telling your loved ones anything like this. God bless you ~ Jacqie

Hi,

A lot of the information I got from this message board either directly, or from a web site that someone recommended.  Look on the part of the board for alternative treatments.  Or you can google anything.  Just be sure to read carefully.  I saw your new message about concern over liquid Zeolite. I think it's important to ask questions.  Have hope, but retain a little skepticism.  There is a regular contributer on this board who goes by Dquixote who has very interesting things to say.  He has written quite a bit about using oleander.  Oleander is a poison and I would have been reluctant to try it with my mother, but I think if I was facing lung cancer, I would try it myself.  (with careful instruction)

I do really feel for you.  My mother died in February and it was a difficult battle.  She did not refuse treatment, but it did not help her.  Her lung cancer was first discovered a year ago when she was having a pre-op for another surgery she needed.  It was quite small and they were able to successfully (they thought) remove it with a lobectomy.  They were so sure it was gone that no follow-up treatment was recommended at the time.  This was in Feb. 07.  She started to run a fever last Aug. and it turned out the lung cancer was back and had metasticized.  She decided to participate in a study through Dana Farber, using Tarceva as a first line of treatment.  Tarceva works wonderfully for a small percentage of people, but it did not work for her; her cancer was extremely aggresive and continued to grow.  Next she was scheduled for 10 rounds of radiation to try to shrink a tumor that was causing her a great deal of discomfort.  She ended up in the hospital after the second one where she remained for twelve days.  She came home under hospice care.  The plan had been for her to have chemo after the radiation, but she was never strong enough for that.

After all this, what I feel I have learned is how little doctors know.  To a large degree they are guessing.  Everyone seems to respond differently to treatment and some people do have good results.  The side affects can be brutal, and this, too, varies from person to person.  I think alternative medicine also involves trial and error, but I feel it is a more benign approach.  Western treatment of cancer seems to be to try to destroy everything in the hope of getting the cancer.  The other approach is more about building up the immune system in the hope that the body will be able to heal itself.

Good luck to you and your dad.  Keep reading.  There are other things out there that may help your father besides radiation and chemo.  And there is always hope.     Roz

When my father died, people kept talking about losing him, as if I hadn't been paying attention and misplaced him!

I know what happened to him. He went on ahead like he was supposed to, making an orderly transition. I'm not religious myself, but he was, so I feel confident.

Sometimes I see something on TV and think how he would have enjoyed it; it takes a while before that becomes a thought that makes you smile.

Now my baby (54!) brother is dealing with Stage IV lung cancer with mets to the brain. He's got that same passive-aggressive streak our dad had, so I bully him unmercifully, talk to his doctors over his head, and generally give him something to fuss about. I suppose if I couldn't do that, I'd have to go clean his house...

--jayne