Palliative Care
 

Well ladies, I am offically quitting treatment. Had a long discussion with family and we all agree, that it is my choice to live a life feeling as good as I can for as long as I can, instead of chasing a dream and worring ALL THE TIME.
I know my fate and I am moving forward finally.
I feel like a huge weight has been lifted from my shoulders. No more worry and wonder. Freedom from doctors and tests and pain and more worry.

I hope everyone knows this is a personal choice and the right one for me. I am not saying it is the right one for anyone else, so please do not think I am proposing others pursue this course.
I also want to say that after reading Ira Byock's book The Best Care Possible, I felt so much better about my decision. I highly recommend it and his other book called, The Four Things That Matter Most. A must read for everyone healthy, sick, young or old. It will change your life.
So, my onc has said that with the lung involvement that has occured twice, I am looking at 3-6 months statistically. I am thinking a year!
I will be checking in with everyone to send hugs and prayers as they mean so much to all of us.
Best regards to all and enjoy Spring,
Emelie

Re: Pallative Care
 

Hi Emelie - I am speechless. What an incredibly brave decision - and in a way, it is the choice to live and be free. I respect it and am deeply humbled by it. God bless you.

Loads of love and hugs,
shobha

Re: Pallative Care
 

Emilie,
I hope the months ahead are filled with peace, joy, and everything that makes you happiest!
God bless!
Denise

Re: Pallative Care
 

Emelie, I too am speechless!

If ending treatment is what you have decided, then I wish you many months of quality time with your family.

all the best
caya

Re: Pallative Care
 

Emelie,

When I am most speechless, I tend to respond by blabbing out of Control!

I know this must have been a challenging decision for you and your family, and I very much admire you for having the clarity and strength to go through that process.

I have heard many times that families (including the patient)'s big regret was in waiting too long to consider this option. The level of compassion, support and as you say, freedom to accept what is and focus on what matters most is not to be underrated. Liberation from this constant battle may be profoundly healing in its own right. You are already thinking a two to fourfold poke in Stat's eye.

I also appreciate that you brought this to the "other", her2 family, and the way in which you delivered the message...with respect and compassion for all of us wherever we are in the fight. Giving us permission to be in a different place while asking that we respect your own carefully considered decision. Acceptance, not defeat; and your best choice for you.

My prayer for you is that you find peace and joy, live your life to the fullest with those most important in your life, and that you are constantly warmed in God's loving light, encircled by our warm and loving prayers for you and your family.

I hope you do continue to "check in" with us periodically, you know we love you very much here, even those of us who have never had the blessing of knowing you in person

Much love to you and your family, and may you have MANY months or years (people do flunk out of palliative care, you know) of quality time with those you love most.

Chris

Re: Pallative Care
 

Emelie
I can't help but think this is a cry for help. Look below, it's what you wrote me just a few weeks ago.


Wonderful, wonderful news for all of us! As the other ladies have said, we need to share the good and the not so good news. That is what Christine would want us to do. It helps us all to keep going and hoping.
Continued success with NED and let's hope this becomes an option for all of us in the near future.
Best regards,
Emelie
PS-Thank you for being such a brave women!



So, while I agree you are FREE to make your own decision about living and dying, please let us know if there is any room in your world for changing your mind.

Karen

Re: Pallative Care
 

Hi Emelie,

I'm glad Karen wrote her message while I was pondering whether/how to share my thoughts.

My first reaction was - after looking over your treatment history carefully - you are depressed and need to see a counselor/psychiatrist and perhaps get some medicine for it. It is one thing to make a decision about life and death when facing terminal illness; it is another when one is depressed and tired.

My In-law's late pastor was in his mid 80's when diagnosed with 'terminal' skin cancer that had originated from the tip of his nose. He chuckled at the notion and said - later shared with us in his sermon - "Everyone's terminal!"

We are all terminal! Nobody lives forever and no sane person would try to persue that. During this 'terminal' life we have bumps on the road. Many of us here, like you, have been through similar battles and experienced all sorts of depressions. Does it mean we should forgo treatment for a potentially fatal pneumonia? Does it mean we shouldn't try to amputate a deseased limb/body part in order to save our life?

It is your life and it is your decision. But I do feel like a second opinion is in order. Nobody should be making such an important decision while under tremendous stress and clinically depressed.

Sending you good vibes.

Re: Pallative Care
 

Emelie, you are one very special gal! As I read your note and then all the responses, I just kept thinking how freeing it would be not to be in the struggle and stress. But your choice has it's stress too, I know. I wish you the most joyful of moments and the greatest level of peace ever. May each day be filled with love. ma

Re: Pallative Care
 

While I respect your decision I tend to agree with Karen and Jackie.
I probably would leave no stone unturned if I were at the place where you are now. I would talk to other oncologists and/or othe medical professionals at another hospital before making such an important decision. There could be something promising on the horizon that one oncologist might not know about. There could be other kinds of treatment availalbe that do not involve chemotherapies.
We are so close to getting Petuzamab and T DM1 approved too. Those medicines could be the miracles we need.
You have my support no matter what you decide. Hugs to you !!!!!!!!!!!!! All the best to you and your family.

Re: Pallative Care
 

Being only 6 months out of active treatment I have often said that I do not know if I would do it again. Not what family members want to hear but many of us know what you have felt and endured over the last several years. When is enough enough and when do you keep fighting? We get tired, depressed, angry, anxious and the list goes on. It saddens me to read your post but I am so amazed at your bravery and courage. Damn this stupid cancer. You will be forever in our hearts and I will be praying for you. I do not know the right thing to say but you will be in my thoughts. God Bless you. Darlene

Re: Pallative Care
 

Emelie I respect and understand your position. I wish you many many wonderful happy times with your loved ones and enjoy the quality of life you want to live. Best wishes and light to you Emelie. Lois

Re: Pallative Care
 

What about just Herceptin and Tykerb? No chemo - just immunotherapy. It could keep you going until TDM 1 gets approved and that's a very easy drug to take.

Re: Pallative Care
 

Emelie,

I meant every word of what I posted above, and will support you whatever you have, or do decide. It is your decision.

I did find find it hard to post, and I wish I had still been pondering my response instead of posting it just moments before Karens post. I want to, and will be supportive of you whatever path you choose... And my comments were in that spirit.

I left much unsaid tho, and let my respect for your choice trump my deeper beliefs.

I respect and also happen to agree with your choice to "live a life feeling as good as I can for as long as I can" I wonder tho about the " instead of chasing a dream and worrying ALL THE TIME".

I believe there are more options to get to feeling as good as you can for as long as you can. Maybe a short term stint on chemo, or a mix of targeted therapy as Becky suggests, alongside palliative care (which is different from hospice) and other supportive measures to help with the worry you (we all) experience could get you to a place of much longer term maintenance on a high QOL targeted strategy with tdm1 and/or pertuzumab. This is not chasing a dream, it's a real possibility.

Emelie, none of these decisions are easy, and nothing is certain. In the end these ARE YOUR decisions. Your choice will be the right one for you, fired in the crucible with all the challenges of this disease, challenges from your friends (us) and above all, the wisdom of your own heart.

Blessings and much love,
Chris

Re: Pallative Care
 

Thinking of you Emelie, I really hope things improve for you, .

Re: Pallative Care
 

Hi Emelie, Just want to say Hi and wish you all the very best every day. Thinking of you and sending love!

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I can only hope you find peace on your path. Blessings,

Re: Pallative Care
 

Emelie,

I support your decision also. Gods blessings to you. You have so much and have been so blessed throughout your life, and had cancer come and go. How do you get to the point ned won't happen again for you? I am asking with the utmost respect I promise. I was just speechless when I read your post. I know cancer is no field day for anyone. I'm sure it took a toll on you. It has taken me two yrs. to come out of a state of depression and mostly it was because of this site seeing there is life after a dx of cancer and mets is just another phase. There are so many women fighting mets day after day some become ned and some don't. I truly live on the breath of courage from all the posts of people just like you. (Christmass came early!) Please if I can be so bold to ask for you to expand on how you get from here we go again to today. Please I'm just trying to understand. I will accept no response also . (who am I to ask so much) Again, Gods blessings to you and your family. All of you are in my prayers

Peace,

Nancy (I don't mean to upset anyone and I'm so sorry if I do.)

Re: Pallative Care
 

Emelie
I have put off posting as I have been struggling to know what to say.
The day to day anxiety of wondering what's going on is draining and stressful plus the thought of more awful treatments is like torture.
I respect your decision but would just urge you to reflect if any of your decision is made due to depression? We know statistically that a cancer diagnosis is strongly associated with both clinical depression and anxiety.
You have achieved NED before so some things work for you and support your immune system in fighting the cancer.I wonder if you no longer believe this is possible?
Becky raised the issue of tykerb as an alternative to chemo and T-DM1 and pertuzumab will soon be approved.It often happens with breakthroughs that once one drug is found effective many others appear along similar lines.
I hope my thoughts and questions are not offensive in any way.
Love
Ellie

Emelie
I would be lying if I didnt say i was sad to read your post. I know that this is an individual choice, and I respect that these are choices we all must make. I also know that you have been struggling with the new chemo, and the shots to keep your counts up. Living life in pain is not a desired thing, but it seems to me there are still so many options to explore.

A few months back, my own oncologist told me I was running out of options via chemos, as I have had so many. I reminded her that it was MY choice to say when i had had enough, and until then, i expected to be treated. You have been a source of strength to me during radiation and so many other times...please lean on us now so that we can help you.

None of us know what is right for another, but I have always sensed such a desire to live in your posts, that this latest development catches me off guard.

Hoping there is an alternative for you, and that you can remain pain free while exploring all options out there besides palliative care. We love you Emelie and we are here for you!

Re: Pallative Care
 

Dear Emelie,

It was so brave of you to tell us this, and tell us your reasons. You must have known that there would be people who would try to talk you out of it.

Thank you for your generosity in creating a space for this conversation to take place. You didn't have to do that. I think it's a huge service to our community that you took the risk.

I support you in your quest for healing and wholeness. I know you are the only one who can say what that means for you.

Healing is not necessarily a matter of bodily "health." 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. Then I sank into it and realized that my goal in life is not to avoid dying (which is, of course, impossible) but to live as fully and fiercely as possible, with as much joy and passion and peace (all three) as I can attain. From your post, it appears that's true for you too.

I hope this community can accept and affirm the rights of each person to decide her/his own course of treatment, and to decide when to stop fighting. I hope we're able to be supportive and loving in the ways we are being asked to do that, whether or not that would be "right" for us. It would be so sad to feel rejected for reaching out in this very personal way. I can't help but think that some of the push-back that you're getting is sadness for you, but that some is projection of personal fears.

There's nothing pathological about death and dying. We will all take that journey someday. There's something to be said for knowing it's coming. There's a lot to be said for having time to say goodbye, for having loving conversations with everyone who matters, and for deciding to live with as much joy and passion as possible. If we didn't have to confront death would be even value our lives?

Thank you again for your honesty and courage. I hope you do keep checking in with us and sharing your experiences.

Love,
Amy

Re: Pallative Care
 

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

Re: Palliative Care
 

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

Re: Palliative Care
 

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

Re: Palliative Care
 

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.

Re: Palliative Care
 

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

Re: Palliative Care
 

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

Re: Palliative Care
 

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

Re: Palliative Care
 

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

Re: Palliative Care
 

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

Re: Palliative Care
 

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.

Re: Palliative Care
 

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.

Re: Palliative Care
 

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

Re: Palliative Care
 

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

Re: Palliative Care
 

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

Re: Palliative Care
 

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.

Re: Palliative Care
 

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

Re: Palliative Care
 

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

Re: Palliative Care
 

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.

Re: Palliative Care
 

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

Re: Palliative Care
 

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.