Palliative Care

[Emelie B]

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

[Shobha]

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

[NEDenise]

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

[caya]

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

[chrisy]

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

[KDR]

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

[Jackie07]

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.

[Mary Anne in TX]

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

[ElaineM]

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.

[chekmark]

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

[LoisLane]

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

[Becky]

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.

[chrisy]

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

[Delaney]

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

[Catherine]

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

[Elizabethtx]

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

[Pray]

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.)

[Ellie F]

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

[Sheila]

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!

[Mtngrl]

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