Palliative Care

Emelie B · 04-10-2012, 09:05 AM

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

StephN · 04-10-2012, 11:43 AM

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 · 04-10-2012, 07:15 PM

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