Palliative Care

[Emelie B]

Oh my goodness, I had no idea my post would cause such a stir! I am sorry for upsetting you all so much.
Just let me say to those of you who suggest that I am depressed and need professional help, that I am seeing a psychologist and I am on Lexapro. I really am not depressed ladies.
What I am, is determined to not be a burden to my family. I know how this ends, as do you, and I want to do it on my terms if possible.
I feel really good now, as I have not had anything for 2 weeks and I am starting feel like a human being again.
There are many reasons for my decision but like I said, I will not be a burden to my family.
I asked my onc about trials, don't qualify for TDM-1 because I have not had Tykerb and he does not think I can tolerate it, and he said Pertussamab (sp) is going back to trials and funding from the government is really tight, so he has no idea when it may be approved. He also said if I continued with chemos, statistically I would have about 12-14 mnths.
So, I am done with toxic chemos. No more.
I hope to live in realtive comfort and make each and every day with my family and friends count.
Our trip to Pais in mid-May is my biggest goal and I am also going to meet Michka for a cup of wonderful coffe and enjoy the view.
So, you see, I have plans and I am doing well.
If you think I am scared, well of course I am. Who is not afraid of the end to some extent? But I can honestly tell you I am at peace with my decision and my husband and I are moving forward.
Thank you all for your concern and your caring thoughts.
I will stay in touch and hopefully I can shed some much needed light on the pallative care process.
Best to all,
Emelie

[Lien]

Dear Emilie,

I too respect your decision. Sometimes it is harder to have no control over your future than deciding to stop treatment. But for those who are still completely focused on prolonging their life, this decision must seem very drastic. It is the opposite of everything they are focussed on.

I remember how my mother struggled with that. Her decision to have no more therapy gave us the chance of spending time with her, walking the last bit of her life journey by her side. It gave her and us peace. She was not the kind of person to wither away and suffer. She was the kind of person who needed to take matters in her own hand and decide when enough was enough.

I have no idea whether it is like that for you. I just know that we are all different and we all have to walk our own path. I hope you find peace while walking yours.

Love

Jacqueline

[sarah]

Dearest Emelie,
I wish the best for you and your family.
Never forget that you can change your mind.
I wish you to be pain free and find some joy.
You are very brave to have bared your soul to us and to bring up such an important and difficult subject.
you have been inspiring and have touched my life.
I embrace you.
Stay in touch.
Big hugs and love
Sarah

[StephN]

Dear Emilie B -

Thank you for your honest and candid post.
(I took the liberty of making a spelling correction on the thread title - to Palliative - with an "i".)

I am sure that the varying reactions come from differing points of view, some of which correspond to those here who are continuing treatment through thick and thin.

Your disease burden does not seem to be so large and numerous that it could not have a chance for control. This situation seems to be partly the cause of the "speechless" reponses, without that exactly being said.

I don't see any current marker numbers, but assume you have current scans to watch the changes by.

Amy's comment: "One of the affirmations I listen to says something like, "More and more, I realize that I can heal myself and live, or I can heal myself and die. My physical condition is not a factor in my wholeness." When I first heard that it was jarring."

That is the same tape I listened to every night as I fell asleep when I was beginning my mets fight against raging liver mets. I asked for healing of my spirit as well as my body. Strong prayers several times a day became my routine. I threw myself into my healing with all my might. If the good Lord might spare me because I was needed by my family and parents, I would give my body over to His plan.

Having stayed alive has not been without its trials, but I managed to make it through them all up to now. My family has never made me feel like I have been a burden, and I do all I can for them with the energy and strength I have, which is not constant. Some days are better than others.

Enjoy your trip to France and the beautiful spring weather that is upon us. My aunt also stopped treatment for a slow growing kind of breast cancer and lived for almost FIVE more years. She did use some alternative methods, and that was nearly 15 years ago.

[Ceesun]

Emilie, I wish only good things for you, but I respectfully disagree with your statement....you know how this ends, we all do. I believe only God knows how it ends. There are those who are statistical abnormalities and those who defy the odds... I would mention Christine, our founder, as one and there are many others. I met another one, years ago, at an Ingredients for Healing conference well before my own diagnosis. He beat pancreatic cancer and survived for 12 years...maybe more...impressive. I wish that we all could do that on this board. For myself, during treatment I have seen my daughter marry, my first grandchild born, my other daughter graduate from college and have gone on a trip of a lifetime...much on my bucket list. Is my situation crappy ....yes! but I still find my joy. I hope you have much joy. I wish you would give thought to a little more treatment and yet I do understand enough is enough. Go with God and I say this because I care. Not trying to be preachy and I hope this does not come across that way. Peace, Ceesun

[Mary Jo]

Hi Emelie,

I echo what so many have so eloquently expressed here. All posts were filled with much love and respect for you and your decision. I, too, love and respect you. Decisions such as yours can only come from you.

I am confident this decision was not taken lightly and that much soul searching and communication took place with the One who holds your life in His Hands.

I pray for you Emelie...I pray that Peace would fill you and that your "journey" would be filled with all those things that bring true happiness.

Love,

Mary Jo

[schoolteacher]

Emelie,

I support your decision. I hope all of your days are feeled with peace and love.

I saw from your signature that you have also been doing Navelbine. I did 10 weeks of Navelbine during November, December, and January, and the fatique was really bad. During the time I was off for Xmas break, I stayed in the bed most of the time. I told my doctor I felt so hopeless. The hopeless feeling came about four weeks of me taking the treatment. He offered an anti-depressant. I would not take them. Toward the end of January the doctor changed my treatment to Abraxane. He decided the Navelbine was beating me up to much. I cried in the chemo chair. This was the first time I had ever cried in the office. I did not want to lose my hair again. My pride got in my way. After being off the Navelbine for a couple of weeks I began to feel better. I am not doing the standared treatment of three weeks on and one week off. I do the treatment every two weeks. I did not have any appetite on the Navelbine, and I think this was one of the things that was making me feel so bad. Like you, it has been in my lungs since July of 2010, and it moved back into my bones in October.

Emelie, you are in my thoughts and prayers. If there is any way I can help you on your journey, please let me know. I don't talk about how I feel a lot on the board or what is going on with my treatment, so the paragraph above was very hard for me to write. I know I do not know how you truly feel at this time, but remember you are in my thoughts.

Hope to hear from you soon.

Amelia

[Mtngrl]

This is such an amazing conversation. So many wise comments. So much love. I feel so privileged to be a part of this community.

It calls to mind something Anne Lamott said in Bird by Bird; Some Instructions on Writing and Life:

"I remind myself nearly every day of something that a doctor told me six months before my friend Pammy died. This was a doctor who always gave me straight answers. When I called on this one particular night, I was hoping she could put a positive slant on some distressing developments. She couldn't, but she said something that changed my life. 'Watch her carefully right now,' she said, 'because she's teaching you how to live.'

"I remind myself of this when I cannot get any work done: to live as if I am dying, because the truth is we are all terminal on this bus. To live as if we are dying gives us a chance to experience some real presence. Time is so full for people who are dying in a conscious way, full in the way that life is for children. They spend big round hours."

Emelie,

I wish you as many big, round hours as humanly possible. We're all going to die, sooner or later. But not everyone really manages to live.

L'chaim.

Love,
Amy

[Pray]

Dear Emelie,

Please forgive my first post. I didn't get it until I read Jacqueline and Steph's post about where most of us are..Fight! Fight! Fight! I did think at first you were making a drastic turn in your care. I see know that your way is just as graceful as Courtney's, She fought till she could fight no more and hanging on by the grace of God. You too have been through so much. You seem to have clarity that I just can't comprehend right now, but I sure hope to some day.

As for being a burden I don't know about that one. I had the honor of helping to care for 3 of my brothers and my mother before they died. We had good and bad times but the good always out weighed the bad. Not for a moment did I ever feel they were a burden. You are obviously a beautiful well loved women, I just can't imagine anyone feeling you were a burden. Love springs eternal. Gods blessings to you and your family. My prayers are with you and your family.

How thoughtful of you to keep us posted.

Peace my friend,

Nancy

[BonnieR]

Dear Emelie,I so admire your courage and sense of peace and resolve. Rather than being upset by anything posted, you are gracious and accepting. You have priviledged us with opening such a sensitive subject and making room for discussion.
Only you can make your decision and I respect you for that. It is a joy knowing you. Keep the faith.

[MJo]

Emelie--Thank you for starting this conversation. You have done us all a favor.
I think you should thoughfully do what you ... and you can always change your mind.

[adelay]

May God's grace surround you today and everyday. Much peace and love heading your way~

[Mandamoo]

Dear Emilie
Thank you for starting such an interesting discussion. I too was taken aback by your choice as I look at your history and think - gee you have a good chance of going NED again. But, it is your life and your choice to live it as you wish. There have been so many wise comments here.
I can't relate to the reasons for your choice. I do not see me burdening my family. For me, leaving them will burden them - my husband has said as much to me. I, at this stage cannot imagine stopping treatment - my son said to me yesterday and I don't know why - if you are dead how will I remember you? He is 5 - women here and those met in real life have shown me I can live with this disease for some time - I aim to live so that he can remember me. My experiences with chemo have been tolerable so perhaps my view is colored by this but I also live in hope that I can heal my body and spirit too. I may very well die but I may very well live.
I believe you are wise and have deliberated your choices and made one that for now is right for you - you may change your mind - your choice alone.
May your trip to France be full of wonder.
Amanda

[Mary Anne in TX]

Coffee in Paris.....it will be magical!

[Laurel]

Emelie,

I just read your post and all I can say is that I am not ready to let you go. Sorry. Selfish? Completely.

I want you to stay with us...can't help it.

[Joan M]

Emelie, You are a beautiful and brave lady, and I respect your decision. My number isn't up yet and nobody knows when theirs will be, but I would hope to accept it with the grace you are showing. You've been a very valuable contributor to this board. My prayers are with you and your family. Joan

[greenacres]

God bless you Emelie. I wish you only the best!

[schoonder]

Emelie,

If being burden to family is indeed true, dealing with burden at this time could well prepare family members for coping with same should even greater affliction happen later in life.

No stone should remain unturned in your quest to receive latest state-of-the-art medication, even ones not approved as yet. The following link points to an article of a dying mom who was successful in convincing Genentech to provide her with Pertuzumab, http://www.facebook.com/#!/LindaHurtadoWFTS
An all out effort to request Genentech provide you with both Pertuzumab and T-DM1 investigational drugs, 3rd arm of Marianne phaseIII trial, should be seriously taken under consideration. If company was willing to do it for one, groundwork should be in place to build on that.

[fullofbeans]

Emilie

I had written a long message but decided to delete it.

I hope that you get whatever ever you truly want, have a nice trip to paris

[AlaskaAngel]

http://thedianerehmshow.org/shows/20...sive-treatment

Because there is reasonable belief that supporting the immune system as opposed to treating it with chemotherapy may actually provide longer life that is also less traumatic than the current chemotherapies, it is worthwhile to keep an open mind about whether chemotherapy or palliative care provides the most benefit.

Either choice can shorten the lifespan. Each choice involves ethical principles, and either choice can fail to observe them.