Denial

[Hope]

I hope this ok to post here. My mom is currently in the hospital and is doing ok, will probably come home tomorrow. I noticed in some posts that those who have lc have said that their families are in denial. The opposite is true for us, my mom is the one who is in denial.

Last week she told my sister that she probably doesn't even have lung cancer, but if she does she will beat it. I know that she realizes she does really have this disease, it is probably just a defense mechanism. Lung cancer for us is the elephant in the room that nobody talks about. Our last visit with the onc before this hospitilization my sister brought up the issue of a dnr order with the dr who said it was a good idea to talk about, and my mom said it was up to the family. The dr said it was up to her. She said she had a living will, but would not discuss that it was not the same as a dnr.

The floor dr today asked again about resusitation issue while explaining the results of some tests that were done. She said that she would talk to my mom about it, which I am dreading since I know that will make her go ballastic. My sister once used the word "terminal" with her and my mother was emotionally outraged that she would say that.

We are supporting her in every way. It is just seems to make it harder that she won't in any way acknowledge what is happening to her. She actually says that she "is fine, well except for ha ha he he". She won't even say the word cancer usually!

I guess I am frustrated that she is possibly not using any time that she has left no matter how long that may be and making it meaningful. I, of course, cannot pretend to imagine what it must feel like. I am only speaking for myself here and my families frustration with how this is playing out.

Any suggestions would be appreciated. Thanks for letting me vent.

Hope

Mom dx with sclc limited stage 0l/02

5 months chemo (carboplatin & etoposide), radiation, no pci

06/03 Recurrance found with follow up c/t, chemo (carboplatin & etoposide) began then stopped due to severe reaction

07/03 pet scan concurred ca in sternum

09/03 ct shows ca spread

09/03 Three 28-day cycles of cisplatinum & cpt-ll

12/03 some tumors responding, began 2 more 28 day cycles cisplatinum & cpt-ll

02/04 No growth, no reduction of tumors. Onc decided on a 4 week rest period to be followed by CT.

03/04 CT shows growth and additonal tumor in renal gland. Decided on l/2 dosage of cisplatinum and cpt-ll. Has severe reaction to chemo and has a seizure. Onc says we will now try Taxol or Gemzar.

04/04 Seizure was possibly caused by chemotherapeutic neurotoxicity. Onc is reconsidering future chemotherapy.

04/04 Hospitalized. Running tests to determine current staging and possible mets to spine.

[DeanCarl]

Hope,

Again, these are the issues I was hoping this forum would address so I'm glad you posted here.

Denial is incredably difficult to deal with in any situation. And, to be honest, there is often not much you can do with someone who is in denial. Confrontations, pleading, logical arguments, all can lead to nothing more than the person strengthening the walls they've set up.

I think, if it were me, I wouldn't push. At the same time I wouldn't "buy into" her denial. For instance, I would not push for her to use the word "cancer" when discussing her illness with her, but I would not stop using it myself, even in her presence. And I'd continue to ask her what she wants to do about the dnr and if she is resistant, then back off for awhile. There may come a time when she's more willing to look at all the possible outcomes of her situation.

Finally, I am a firm believer that how a person chooses to live their life in ANY situation is completely and absolutely up to them. I may not agree with their choices, but, since I want the same freedom for myself, I am required to grant them the same freedom.

Hope this helps a bit. It sounds like a tough situation.

Dean

[gail]

When my FIL was diagnosed in the 80's, it was the elephant in the room. It was not openly discussed with the family at all. I was angry and felt isolated, since I tend to want to talk about everything.

After he died, I came across Elizabeth Kugler Ross's book On Death and Dying, and just by chance opened to the chapter that said the patient calls the shots when addressing the illness.

I did not read the chapter closely, but remember being shocked .

Maybe you can find the book?

good luck

gail

[Snowflake]

Hmmmm...just to play devil's advocate here, place yourself in that bed...how would YOU feel with someone pushing the DNR thing and someone else using the word "terminal"?

I can think of two responses I might have in the same situation - I'd either begin the process of dying since my FAMILY thinks I'm terminal and will soon be incapacitated OR I'd kick EVERYONE out and sever the ties since there's obviously no one supporting me beating the disease... Now, honestly, what would YOU feel, were the roles reversed?

YES, it IS important that her wishes are known - but what if she doesn't WANT a DNR? What if she's holding out for that last minute reprieve if it comes down to that? And "terminal"? I'd fire a doctor with that attitude, I sure as shootin' wouldn't want to hear it from my own family. Right now, your mother needs support, and some empathy would be nice. It's only six letters, but "CANCER" is a BIG word! So she doesn't want to say it - guess what, I didn't EITHER - and I STILL don't like to. Sure, it's one thing to be emotionally detached by wearing a "Cancer sucks" T-shirt, it's another thing entirely to use the word in a sentence that is descriptive of the "new normal"...

Help your mother, by changing your attitude. Let her know that you have faith she CAN beat this, stop pounding in the DNR. There isn't much to one, it's a piece of paper. Keep one on hand for if/when she decides to sign it (I REFUSE to sign one, but she may change her mind).

I know that this is not an easy thing for you, but remember, SHE is the one going through it, you're just watching. It's an "experience" and the mind trip is the hardest part.

I wish you the best,

Becky

[gerbil runner]

This is kind of a scary story, but I think it should be told here.

When my mom was first hospitalized, the onc. at the small hospital thought she had pancreatic cancer due to the met there. With spread to the lungs, it would have been Stage IV...if you think lc stats are grim, take a look at pancreatic cancer. Moves fast and has very little respect for chemo. My mother's oldest sister died of PC about 10 years ago, and it does seem to have a hereditary tendency.

The onc. explained that with the lung tumor, my mom could hemorrage, and there was a 50% chance of it being fatal. He told us that if she were intubated for a fatal hemorrage, it could not be removed. Mom signed a DNR.

Then the pulmonologist told mom he thought it might be lung cancer. Mom had to have a stent placed to open her bile duct (jaundice is what sent her to the hospital), and brushings were taken to try to get a dx. No luck. She was scheduled for a needle biopsy of the pancreas, but the tech backed out at the last minute, saying he was not comfortable reaching the tumor location. So the pulmonologist suggested a bronchoscopy.

During the procedure, Mom bled from the tumor and had to be intubated. Mom and Dad had revoked the DNR for the procedure. The hospital staff was not very encouraging about Mom's prognosis that awful night in ICU. One dr. was trying to prepare my dad for the possibility of her not making it. But she proved to be quite a fighter - and really tough to keep sedated . A few days later, she was stabilized and taken off the ventilator.

And now, 5 months later, she's NED and ready to undergo testing for stem cell supported therapy. If Mom had not resisted keeping the DNR...I don't even want to think about it.

So if someone doesn't want to sign a DNR, let it be the patient's choice. Sometimes crisis points happen which can be overcome, even when the disease is progressing. I'd think long and hard about a DNR for anyone in my family, because I've seen first-hand how even when something goes wrong, it may not be as bad as you think.

[Ry]

Hope,

First imagine I am imitating the robot from Lost in Space and yelling DANGER DANGER. This is one of those "be careful what you ask for" situations. The denial is ok. It's her way of coping for right now. Believe me when she comes out of denial it may (and mostly likely will be) a lot worse. The flip side is despair and conversations you may THINK you're ready to have, but trust me you aren't. If you force her to face this before she's ready you will regret it. Give her her space and some time. When she's ready she will deal with her illness, let her do it at her own pace.

[lilyjohn]

Hope I will tell you that your post hit me like a hammer between the eyes. The things that you are talking about have been my nightmare for months a nightmare that never ends.

Your Mom may be in denial to you but inside she knows what is going on. Keeping the word Cancer out of the conversation and not allowing people to insist that she is dying is the way she is coping with her illness. Believe me you don't want to see the other side. Once that hope is gone and the word Cancer is spoken continuously she will not be able to forget it for even one minute. Fear is one of the most life threatening side effects of cancer. I know because I not only lived with it but I saw that fear take the person that I wanted to spend the rest of my life with.

Anxiety not only weakens the mind it weakens the imune system and makes it harder for treatments to do their job. When a person is constantly called on to sign a DNR they are being told "you are going to die. Make it easy on yourself and everyone else." I watched as one doctor after another tried to force Johnny to sign a DNR. They used every tactic they could think of but still he refused. All their efforts did was cause the anxiety to get worse. One *ss of a doctor even refused to treat him because he wouldn't sign a DNR and that ultimately led to his death. I sat with him after a doctor told him that once a person is on a resperator they will never be able to breathe on thier own. He was trying to scare Johnny into signing that DNR but it didn't work. Instead he asked me "why is everyone so intent on letting me die?"

You don't forget those things Hope. They become a part of your life. Your mom is doing what she has to do to survive. As Becky said so well you may be watching but SHE is the one facing Cancer. She is the one who has to decide just how much she is willing to endure to live. It is her body, her life and her choice. No one has the right to take that from her.

[Hope]

Thanks to everyone for your responses:

DeanCarl- Thank you for your gentle encouragement. We don't want to be pushy with anything. I appreciate the opportunity to vent our frustrations.

Gail- Thank you for the book referral, I will look it up my next trip to the library.

Snowflake- I hope you understand we are not asking her to give up, we are asking her to let go. NOT let go of her life, but whatever it is that would have her not be open with us and discuss what is happening with her, what she thinks and ultimately what she wants. Someone gave me a great poem today at work:

Giving up implies a struggle, letting go implies a partnership.

Giving up dreads the future, letting go looks forward to the future.

Giving up lives out of fear, letting go lives out of grace and trust.

Giving up is a defeat, letting go is a victory.

Giving up is unwillingly yielding control to forces beyond myself, letting go is choosing to yield to forces beyond myself.

Giving up believes that God is to be feard, letting go trusts in God to care for me. -Hank Dunn

All of those things are my desire for her.

I imagine that if she would ever vocalize her feelings, they would be the same words that you just used. And you know what, those words would be welcome to hear. Yes, this IS her experience. It would be nice if it didn't affect anyone else, but unfortunately it does. Deeply.

Gerbil Runner- Thanks for relating your story about the dnr. We don't want that experience to ever be repeated. I know it is an important issue, one of many that families and individuals with lung cancer must face.

Ry- Thanks for your insight and kind words.

I hope that ultimately my mom would be able to say that she lived life- all the way- to the best of her ability. And I am hoping that lung cancer doesn't impede that, and it is frustrating to me that, in my mind, it is.

Hope

[Hope]

Lillyjohn, I forgot to reply to you!

Thank you for sharing about your and Johnny's experience. I remember when you posted that you felt that the drs were the main reason why Johnny gave up. I'm sorry that it has caused you enduring pain, that you feel that he would have had more time had he not been so discouraged by others.

We are not trying to discourage my mom. She is a fighter, that is how she has made it 2 l/2 years total following a sclc diagnosis, and 9 months past a recurrance. She has beaten the "odds" every time.

It's obvious that her denial is how she is dealing with the disease. Yes, it is HER disease. I fully realize that. She is the one who has cancer. She is the one who goes through treatment. I think it isn't wrong to only hope that this all plays out the best way it can. And when a person won't even consider discussing what needs to be done (my dad drives a truck for a living and is hundreds of miles away for a week at a time and my mother lives in the boondocks one hour from us and the hospital) then it very frustrating. LC affects everyone, as you sadly experienced yourself.

Thanks for your reply.

Hope