My sister is back on trial

All Everyone,
Here's an update on Carole.
As it turns out they were not siezures that she was experiencing. Due to brain swelling....we still not sure what caused this sudden swelling (probably the tumors) she had episodes of complete confusion and blindness as well as loss of gross and fine motor control. She's back on 4mg of Decadron twice daily and symptoms have disappeared. During her week in hospital MRI's were sent to Boston and we received a phone from Dr. Burstein to say that she had been pulled off the trial. That evening my older sister and I placed a conference call to Dr. Burstein pleading our case which was that they were comparing old MRI's...and perhaps she hadn't had progression. We also asked that he reconsider because it is her last hope. To make a long story short...we were right. There has been no change in her brain mets since starting the trial, except for the swelling. She is unable to fly right now so my brother-in-law and I drove her to Boston on Sunday to pick up some new meds.
We are really preparing ourselves for the worst possible news because Dr. Burstein is not confident at all that this will work. Two weeks ago, we were told that she will live 4 to 8 weeks, but we will hope that this drug can stop that progression and we hope that she can better tolerate it. As of today she is experiencing nausea and diarrehea. It breaks my heart to see her feeling so ill. We are very careful to allow her to make the decisions now and we've told her that we will support any decision she makes and that she has been brave and fought hard. She wants to give it one last try and if it doesn't work she will consider the WBR. She says that she is ready to die, that she can no longer live this way.
Doctors in Ottawa are suggesting a third round of WBR. They told us that this would defintely put her in a "vegetative state", but that would only set in after 8 months or so and she won't be living that long. We asked what would be the point and they said that she would have better quality of life for her remaining months. This makes no sense to me.
I'm so sorry for posting something so depressing...and most of you will never have to deal with this. Hopefully I'll have something exciting to report in three weeks. Until then, I continue to read posts and hope for the best for my sister and all of you.
Celina

Dear Celina, My heart goes out to you and to your sister! I lost my sister, my only sibling, to breast cancer 20 years ago, the same year I was first diagnosed myself. She fought a good fight for 7 years, but they just didn't have the treatments then that they do now, and her doctor had just not taken seriously the lump in her breast until it was too late. It is hard to feel so helpless, and yet you are doing all you can for her, plus the tender love you are showing her. I know I am not the only one on this website who will pray for Carole. We will all be hoping for the best and anxious to hear your report. Tell her there are a whole lot of people who have also been touched by cancer and who are reaching out to you both with love and prayers. Prepare for the worst, but expect a miracle! Love, Tricia

Oh Celina...

I know how Carole is feeling -- it is NO fun business to be ill -- and also I acknowledge that your sister is very, very, very forunate to have such a loving & supportive family. Celina, you are being the perfect sister to her. :-) Your family is one HUGE BLESSING of many in her life!

I praise the Lord for you all having the blessing to one another. :-) There is nothing better than unconditional love! May God bless Carole & your family, as you go together through this difficult ordeal.

Hugs ~ JO.

[StephN]

Dear Celina -
I was about to post to you to find out an update on Carole. This is much better news than I was fearing for her.
At least they gave her the drug again as a "last ditch" effort. It is still possible that she can pull through this, with some help from the Almighty and all of our prayers.

Interesting concept about the WBR being rcommended. It would definitely kill some of the cancer, and if the effect on the rest of the brain is more delayed, it COULD improve her last weeks/months. I would want to run this idea past the docs at Boston as well. WBR is so debilitating in itself, I am not sure the trade off in loss of energy is worth it.

Good going! You took the bull by the horns and advocated wonderfully for your dear sister.

Thanks for the responses....you're all so very reliable!
It's nice to have a place to express my thoughts...my parents, sister, brother and my husband are so consumed with the fight themselves, I don't always have a place to share my most deepest fears. I'm always trying to remain so positive that I'm afraid to let go of the hope. To make matters worse, my sister-in-law who is also stage IV breast cancer with bone mets has had progression to her liver.
I will let you know how Carole is fairing out with the drug as soon as we have some results.
Happy healing to all my friends here at her2support!

Celina,

Hang in there. I'm glad there's a place like this you can come to.
Remember that doctors can NOT predict a patient's death. Your sister's a fighter and will leave here only when she's tired of fighting. I pray for her that she'll feel better; sounds like the Decadron is helping.

As for Carole, don't be worried. Many of us have had or now have bone and liver mets. I've had mine now for 2 years. Many options are available for her.

Be sure to take care of yourself during all this.

Keep us posted.

Love and light,

Lisa

Celina,

Sorry for my mistake about your sister's name and the liver/bone mets. I'm tired and I must have confused posts.

Love and light,

Lisa

Celina, the old saying "live one day at a time" comes to mind. It's all you, Carol or any of us can do, so don't let the worries about what tomorrow may bring crowd out the importance of today.

I'll be keeping you all in my prayers.

<3,
Lolly

Brain mets does not have to mean a death sentence. There have been far too many people with a strong will to live who have beat it. But you can't do it through traditional means. It takes a new form of consciousness--or so researchers have determined. Although the altered consciousness is fairly easy to achieve (or so practitioners report), accepting it is the hard part. Some people are too wedded to their normal modes of thinking about life and reality to make the effort. An individual's desire to live has got to be greater than their need to be right about the way reality does and doesn't work.

If your sister really does want to live and is only accepting death because she feels she has no choice, I highly recommend starting with a book, "The Whisper in Your Heart." A man who's become a friend wrote it. He worked for five years with a woman with terminal cancer who beat it through their work together. But as Steve says throughout the book, she had an undefeatable desire to live and was willing to do whatever it took to achieve that. Together they found an answer.

I'm in a doctoral program and have been examining a lot of mind/body research for my dissertation. There's a LOT out there, but Steve's book is a great place to start.

Traditional Western medicine is probably the poorest place to place ones trust for a cure to metastatic disease. It's important, for sure, but certainly only part of a range of options. But you have to be careful because there are some soul-less charlatans out there. Fortunately, Steve's book is not one of them.

The very best energy for you and Carole.