Latest news on Jayne
"We made the difficult decision to go onto Hospice Care later on this week..I'm still going to fight to live!"
She sent me a private message earlier that she and Jimmy had managed to negotiate a "deal" with Hospice that will allow her to keep her feeding tube and her abdominal drain tube. In fact, they have promised not to pull the (Hospice care) rug out from under her, no matter what devices, machines, etc she chooses to use.
She is just in so much pain - unrelenting pain - and Hospice can provide much more effective pain relief than any of her other options.
Her message said she would probably begin Hospice on Thursday or Friday.
Although I yearn for some way to control Jayne's pain, the thought of losing her absolutely devistates me. She has been my hero....my spirit sister-warrior who spits in the face of death. I hope they make her story into a movie....I truly do. Not only would it show the world what a brave, selfless woman she is, but it would do so much to personalize ovarian cancer.
I absolutely HATE this disease. With every fiber of my being, with every breath I take, I detest it. And I long for news of a happy ending - somewhere, sometime. God, please give us a sign, so we know it's not hopeless. Give us an icon to emulate and celebrate. I was so hoping that icon was Jayne. I am beyond sad to think it may not be, after all.
Carlene
Comments
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Jayne
Carlene,
Your post says it all. I have followed Jayne's blog, but selfishly do not know if I have the fortitude to read the next chapter, in light of my probable recurrence. I remember asking one of my chemo nurses about permanent remission after the first treatment and she said in her 17 years, she has only seen a handful....
What this disease does to the body is just so vicious. I am just amazed at the sheer guts Jayne has shone and the resources she has been able to obtain. I certainly cannot see one of my docs bringing me that brown machine she had delivered.
I keep hoping that the icons we wish to emulate and celebrate are out there living their lives and not on these boards, but 'am SO greatful when they pop in with a "hope" story.
I think it is so hard not to think forward and just be happy for the moment. I need to work on that! 'Seems so many can do it, but it's not easy for me.
I think a movie about Jayne would be inspiring, but it doesn't look like a happy ending
Jayne, if you are reading this, you have touched so many.
Hugs, Ginny0 -
Jaynenancy591 said:AMEN!
Carlene,
From your lips(or fingers) to God's ears..
I regret that I did not have the opportunity to know this wonderful person. Your words are beautiful Carlene and I too hate this disease. We need to know how the "fight" is so important to all of us. My prayers go out to you all for having lost a friend, but better yet to have known her.
Verna0 -
I know! Can you believekayandok said:Jayne,
is an amazing warrior, and my hero too. It is also amazing that she has been able to negotiate still getting the feeding tube. I have never heard of that!
k
I know! Can you believe that? Nobody but Jayne could/would negotiate terms with the Hospice people.
She was advised over a year ago to stop treatments and feedings and sign up for Hospice because she had only weeks left to live. Obviously, she didn't agree. Nor did she go into Hospice care. And of course, she didn't die, either.
This time around they were a little more relenting. Jayne said she had no interest in starving herself to death. The Hospice nurse told her that the TPN feedings were "feeding the Cancer" (personally, I call BS on that one). Nevertheless, Jayne would not commit unless she got to keep her feeding tube and the tube that drains her abdomen (in case she does eat something, it has to come out, one way or another). AND she gets to keep her "vaporizer". (FYI....Jayne lives in California, where medical marijuana is legal. She credits it with her high Q of L these last months and swears she would have given up long ago without it.)
Her will to live is nothing short of amazing. She is in unrelenting pain; her digestive system is useless; she has hoards of tumors in virtually every major organ system; she cannot eat, but still, she wants to live every last second that God will allow her. No shortcuts, no going gently into that good night for Jayne. She is still updating her blog and get this.......SHE IS STILL RIDING HER BIKE. She cannot walk very far, but she can ride her "old lady" bike. And most amazing of all, there is not a trace of bitterness in any of her messages - either public or private. No self-pity, no wailing at God or the unfairness of life. I don't know anyone worthy enough to carry the torch after Jayne. Who can hold a candle to that kind of raw, naked courage?0 -
raw, naked courage!Hissy_Fitz said:I know! Can you believe
I know! Can you believe that? Nobody but Jayne could/would negotiate terms with the Hospice people.
She was advised over a year ago to stop treatments and feedings and sign up for Hospice because she had only weeks left to live. Obviously, she didn't agree. Nor did she go into Hospice care. And of course, she didn't die, either.
This time around they were a little more relenting. Jayne said she had no interest in starving herself to death. The Hospice nurse told her that the TPN feedings were "feeding the Cancer" (personally, I call BS on that one). Nevertheless, Jayne would not commit unless she got to keep her feeding tube and the tube that drains her abdomen (in case she does eat something, it has to come out, one way or another). AND she gets to keep her "vaporizer". (FYI....Jayne lives in California, where medical marijuana is legal. She credits it with her high Q of L these last months and swears she would have given up long ago without it.)
Her will to live is nothing short of amazing. She is in unrelenting pain; her digestive system is useless; she has hoards of tumors in virtually every major organ system; she cannot eat, but still, she wants to live every last second that God will allow her. No shortcuts, no going gently into that good night for Jayne. She is still updating her blog and get this.......SHE IS STILL RIDING HER BIKE. She cannot walk very far, but she can ride her "old lady" bike. And most amazing of all, there is not a trace of bitterness in any of her messages - either public or private. No self-pity, no wailing at God or the unfairness of life. I don't know anyone worthy enough to carry the torch after Jayne. Who can hold a candle to that kind of raw, naked courage?
Jayne is amazing! I put a post-it note on my mirror this AM that says simply "Jayne". The next time I even think of whining..... well, I'll remember.
(((HUGS))) Maria0 -
wow!Mwee said:raw, naked courage!
Jayne is amazing! I put a post-it note on my mirror this AM that says simply "Jayne". The next time I even think of whining..... well, I'll remember.
(((HUGS))) Maria
I started reading her blog from the beginning---which wasn't really the beginning of her cancer story. Anyone know how to get the real beginning? Anyway---she is totally amazing. I really liked getting to sense her spirit through her writing and photos. Just amazing. I am hoping and praying for her and and her sweet husband.
Wendy0
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