No treatments for me.
Comments
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Just stopping by briefly to say hello to Cin and everyone else. I had a very long day at the clinic yesterday, will check back here later when I am rested. Love to all.
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Cin, hope you're resting comfortably. Thinking of you.
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Cin and Linda take care of yourself!!
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Hi ladies! I am worried about Cin...been 7 days since she's posted. I hope she comes back soon and I know it is tough to pull thoughts together...just missing her lots here. Her "voice" and presence are so huge and important to this topic and in our lives. I know she's changed my life forever and I am so thankful that she opened up and shared her thoughts out here in cyberworld with a bunch of strangers/sisters.
I don't know if any of you know Cool Breeze from the Stage IV board but she writes a great blog http://www.butdoctorihatepink.com/
I love her insights, much like our wonderful lady here, she is just living and dealing daily with the crap she's been dished out. She recently left this board and talks about why here:
http://www.butdoctorihatepink.com/2013/02/decline.html(cut and paste into browser)
I thought this was an interesting and poignant post and wanted to share it with all of you.
Love and hugs tonight and always!
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me Carp...can we get in touch with Elaine?
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Wondering about Cin too. I hope she is comfortable. Elaine, any news?
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Looks like Elaine was on the BCO site yesterday - hoping next time she gives us a shout out (hint, hint!) ;-)
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Hello Dear Ladies,
I know it's been a while, but darn, Life keeps wearing me out!
I got a call from Rick last night, asking if I'd talked with my sister in the past couple days. I said, no. Kinda figured he'd know that cuz he always answers the phone, so I took a deep breath and asked what was up.
Cindy's been taking another of her "vacations" this week, since Tuesday. Another lung infection -or did it ever really go away? And he says she's refusing antibiotics and even oxygen. Every time he calls, she's asleep, and he thinks she's changed her password so they won't transfer his calls. He says Mom is even mad at Cin for refusing the oxygen, too.
A real long story shortened ... I talked with her last night and she seemed pretty coherent. Said her O2 saturation had been in the 70s, she's still doing her breathing treatments every 6hrs, but is refusing oxygen -she's just going to let her body do its thing. She's gotten an infections around the lump under her arm from the bra strap rubbing against it -she's quit wearing a bra now. She is refusing antibiotics for her lungs and the infection around the lump. The Dr. has upped her Dilaudid to 32 an hour and 32 every half hour with the bolus when she pushes her button. (the dose had been 28 and 28 and hadn't changed since I left in January) She's agreed to a PET scan after some convincing -she was worried if they didn't find enough cancer they'd cut her pain meds -but now she's said just do it. Waiting on the insurance co's approval. (that's also something she'd agreed to around Christmas, but it never got scheduled) She said with her O2 dropping, when she goes to sleep she never knows if she's going to wake up again ---how great is that! Doesn't everyone want to die in their sleep?!
Our phone connection got screwy and we got disconnected 2x, when I called back the nurse said Cin asked for me to call her back today & gave her permission to tell me anything. So I asked her for a complete run-down, cuz family and Cindy were telling me way different stuff.
So the nurse says her pain is down to about a 5 since they upped the pain meds, she's much more alert and coherent than the day before, she's lost weight and is paler than when she was there in January, she's feeling calmer, O2's been in the 80s (they prefer it at 95% or better) but is refusing oxygen "as is her right" and her O2 sat then was 91%, with the O2 being lower she's feeling weaker, inflammation around the lump under her arm is red and swollen on skin surface, it's weepy but the skin isn't broken, she's been eating everything they give her (except only half of the sloppy joe last night), confirmed refusing antibiotics, again "as is her right"
I am about to start calling to check in on things tonight -but wanted to pass this on first so I didn't confuse things.
I'm amazed at how well you all keep going! "Suck it up, Buttercup!" was what I used to say all the time, but no one could ever say that to this group! I'm reminded about something Cin said to me before I went out to see her. "Things are gonna change up for a little while when I die, but then it'll be ok."
Love & Hugs, Elaine
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I'm back
Just chatted with Cindy, she's really feeling crappy. She's exhausted and her body won't let her sleep.
DH went by today and they got the funeral arrangements completed and signed. All DH has to do is make a CD of music, Cindy says he can choose whatever he would like. She's picked out a box, like our dad has, and she chose the engraving. "Now when I pass away the Funeral Home will come get me. Then they'll set up a meeting with the family ..." all the pieces are in place now. I asked if there was anything she wanted to do but hadn't yet, and she confidently said, No.
She says she's been talking with the chaplain the past couple days and has gotten her Peace back. I asked if she had a firm grasp so nobody could take it away again and she said yep.
She says she's had a steady stream of people calling and coming by to see her and she's exhausted. She wants to be left alone. She doesn't want to deal with people, she just wants to be by herself. She's reading a book she likes, I told her I was happy she was reading again -she laughed and said it's got really large print like old ladies read. I laughed and said she's gonna be a grandma soon, so she needed really large print! I got another chuckle.
She says she's really proud of her kids -and happy they waited til they were in their 20s before having kids. Her DIL is dilated 2cm and been having Braxton Hicks contractions, but still has a couple weeks before the expected due date. She said, You know they say when one soul leaves a family another is delivered. I said, yeah. She said, There ya go.
I told her I was proud of her. She said, "Thanks, I like me." I chuckled and said what an awesome world this would be if everyone could say that about themselves at the end of the day. We talked about saying I love you to our significant others, and I don't say it nearly as often as I used to. I started saying I like you. Cin says she and her DH used to say "I love you ... I love you, too. I like you ... I like you today, too" She says it's easy to love someone, but after being together for years it can be hard to like them with all their quirks.
Our conversation got cut short cuz DM and DB (I'm guessing that's right for mother & brother) dropped in on Cindy, so she asked me to call back tomorrow. I will.
Love and Hugs, Elaine
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Thanks, Elaine, I really appreciate the update on Cin. Sounds like she's not at home anymore, then? She's doing it her way, and I'm glad she's still calling the shots!! Good that her 02 id better and she's eating! Please send her my love. Should we send cards and stuff to her house or is there another address?
Thanks again and hugs, I know this isn't easy for you but you're handling it with so much grace and love.
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Elaine, thank you very much. You have become our conduit to Cindy. I know we all want to respect her wishes. Her ozygen levels and appetite make me think Cindy will be with us for some good time yet.
I know I was so angry with my Mother as she declined. I had some good reasons for being angry but was axtually angry because I was afraid of her leaving. It is difficult.
Love and thank you once again
Ginger
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thanks so much Elaine for checking in and filling us in on her and let her know we were asking please....I get she wants to be left alone, it is exhausting having to "entertain" people when you are there, I eve say that at chemo, if people don't come, I feel like I have to entertain them and I like being by myself some times...
I think it is awesome that she is reading, and she knows it is coming and she is so good with that and seem comfortable with her decisions....you all are so brave....
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I have finaly caught up... been bed ridden these last two weeks of taxol...
But i often think of you Cindy, laying in bed too... and i dont feel so alone.
My heart sends love to you Cindy and Elaine
No matter how hard this gets
No matter how angry we are
You have taught us all something , in sharing your heart with ours..
Elaine... i like you
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Greetings My Wonderful Women
I'm in a goofy mood this evening ~tried to talk with Cindy but she's asked that all calls be held today. No worries, though, she hasn't had much sleep at all in about 3-4 days. So her halting everything is a good thing.
The nurse says her O2 is in the low 80s, but that is because she's coughing so much & so often that it forces the movement of oxygen, it's not really a true indicator of her resting O2 saturation. She didn't eat breakfast, about 80% of her lunch she did eat, hasn't had dinner yet. She's still able to move around and goes outside to smoke (a way to maintain some piece of sanity/normalcy, is my guess on why she's still smoking).
I asked Cindy last night where to send cards & she said to the Hospice unit (her "vacation" destination). However, the nurse tonight said there's talk about Cindy possibly going home tomorrow. What's changed? Well, the discomfort from the lung infection has convinced her to agree to antibiotics. So, if you'd like the address to the Hospice Unit, PM me, I'll be happy to share it & I know if anything for Cindy got mailed there, it'd find its way to her ~that's how they are
I appreciate that you all appreciate my updates on Cindy ~it's nice to know people care ... remembering that little things often make the biggest impacts for others helps me a lot,
~~~blowing bubbles filled with love to each of you -and don't worry about the bubbles popping, cuz that just ~~~means the love's spilling out all around you
Love & Hugs, Elaine
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Thank you again Elaine for sharing with us. I look for you every time I come here. I hope you are doing some nice things for yourself, whatever they might be.
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Thanks Elaine.......
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Thanks Elaine for the updates....
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Elaine, thanks for checking in. I sincerely hope that the antibiotics help make Cin a little more comfortable. Hoping too, that all goes well with the birth of the new baby!
Much love to you both.
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You're all welcome -try to have some wonderful moments
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Hi Elaine,
Great to read your updates on Cin. Give her my love and thoughts and prayers.
You're the best Elaine. I don't have any sisters but if I did I'd like to have one as good and kind as you are.
Strength to you and all your family and I hope Cindy gets home soon and starts to feel a little better with the antibiotics.
hugs, Lorna
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I just lurk around this thread and have been reading it since Cindy-Rose wrote it. I just wanted you to know that I agree with everyone and that you are the kind of sister anyone would love to have. Please give Cindy hugs from me too. May God bless her and keep her pain free.
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Piling on here - I agree! I don't have a sister, either, but Elaine, you would totally rock! :-)
Hope Cin is resting easy right now at her vacation place...
Hope you ladies all have a nice evening, wherever you may be. I have a CT scan w/ dye and a thyroid ultrasound on Wed morning, something ain't right in my neck and it's getting worse now. The evenings are the worse after a day of talking and swallowing. Hoping answers and a fix are on the horizon, will keep you posted. A little stressed right now. Joined a thyroid forum and it sucks so I quit after one day, nothing like the support and ladies of BCO. This is a great, loving community! Hugs to all of you cybersisters.
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Carpe, will be praying for a good outcome for you on Wednesday. Im sure it's a terrible worry for you but stay strong and positive........
lorna
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Carp I am so sorry, thinking about you on Wednesday....hang in there...
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Thanks ladies, you're the best! I won't know anything for a few days but happy to get this ball rolling. Sitting outside getting fresh air right now, good for the soul :-)
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Carpe - I missed the sunlight today, working. Now windy and cooler. Remember to breathe too, test anxiety out. Elaine - I agree, if only one wish is to have someone at our side that is completely there and competent and loving. Thinking of you Cindy.
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((((Elaine)))) thank you for those updates. Please PM me Cindy's address at the 'vacation' home. I do hope she gets to go home. It's great that she is still mobile.
Carpediem, best of best of luck on Wednesday. Hope the neck trouble is just stress and amenable to a great massage.
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Thanks, ladies, off to my appts now. Appreciate the support.
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Checking in - I have not had internet for a couple days, so just catching up. Am cheering for Cin - do it YOUR WAY, girl!!!! I am so so sorry you are having to go through all this, am so proud of you for remaining true to yourself. You are such a brave woman. And Elaine, you are another very brave woman to support your sister through this very difficult journey. I pray that you both have peace throughout each moment of the day, even with the pain and stress of being separated geographically.
Carpediem, hoping all goes well for you today.
I was invited to give a presentation to a large group of toxicologists this week, and I talked about living with chemotherapy-induced peripheral neuropathy. There were over 200 researchers in the audience, from pharma, FDA, other regulatory groups, policy groups, researchers. I asked that they continue research to find cancer cures that are not so toxic, cures that will provide a decent quality of life along with extending that life. I reminded them that there are many out there who either decline treatment because of the SEs, or quit treatment, or live with pain and poor quality of life, symptoms that they live with 24 hours a day, EVERY day, without any relief. I got the most applause of any speaker for the afternoon, and many of these researchers came up to talk to me after the presentation. I cannot do nearly the things I did prior to BC and chemo, but I CAN share my own and our collective experiences with those who are trying to find answers.
You were all in my heart as I did this. Love to all, and special prayers for Cin and Elaine.
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Carpe, my fingers and toes were crossed for you xx
Linda, you write so well and I'm so proud of you xx
Cindy, hope your comfortable and reading something good.
Xx0
