No treatments for me.
Comments
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Just checking in tonight. Today I woke up thinking "what can I do today to make DH happy?" This is the first time in a year or maybe 2 that I have awakened with a positive thought rather than "oh, crap, I'm still here...." Sandy, your comment about making memories is kind of where my thinking was today. I worry about him and I sure want his memories of me to be good ones, not ones of me whining and complaining all the time. I want him to think of me as laughing and being outrageous as I was when he met me nearly 35 years ago. Some days when I am in pain and discouraged, it is very hard to be the person I used to be, but when I come here, I am reminded that we can ALL share love and a laugh, and we can share our tears and pain here, but we don't have to make the lives of those we love miserable in the process.
Cindy & Elaine, special prayers and thanks to both of you. Thanks for keeping up the blog. And I have just ordered Fannie Farmer's book for my Nook, so thanks also for the reading recommendations!
Hugs and love to all tonight.
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Hello Lovely Ladies,
Thank you Dawn & Sandy ... Cindy's not really "into" computers anymore -she says there are more important things for her to do -what she means is that her energy is limited and in small doses most of the time, so when she's awake, she's taking care of necessities for her -talking, bathroom, eating, drinking, limited reading, word finds, then wiped out & sleeping. Her vision is getting worse & she's not able to read much herself lately -reads the same paragraph over and over but doesn't remember what she read but is aware of the fact it didn't sink in -very frustrating for her (would be for me, too! lol) She is able to do the jumbo print size word finds -she's got to finish the puzzle though! If she starts falling asleep w/pen in hand, I ask her if she's ready to rest & she says she's gotta finish! So, she does :-)
We're noticing some memory lapses here and there -some not a real big deal, like being off by a day which day it is (they tend to blur when you don't have particular things to do on a said day, doctor appts/shopping/etc...) but she was really concerned when she forgot her Doctor came in and talked with her for about an hour in the morning the day after Christmas. Her hspc nurse at the facility asked if the doctor had been in and Cindy insisted that she hadn't. Later the nurse came in and said that the Dr had been there, did she recall talking about xyz? Then most of visit she was able to recall.
Her hand coordination is slowing down -sometimes she's very slow and deliberate eating and crossing off words, usually this is after she's taken her pain meds. She is absolutely fine getting into/out of bed from her wheel chair & we washed her hair at the kitchen sink last night -wheel chair behind us, her balancing on her leg while holding the towel around her neck to be sure a) she stayed dry, b) we didn't get soap/conditioner near her port! Oh my gosh, we giggled so much!
We have been able to get her to sleep better! The night before last she slept about 5hours straight & last night after our pedicure with Lemon Grass and also Rosemary essential oils, she slept for about 7hrs :-) Her O2 saturation was at 98% 2 days ago, too! Her breathing is much easier & the coughing is sporadic. So, some things are looking better.
There some family issues we're struggling with -hopefully these will leve out soon.
Lots of Love, Elaine
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((((Elaine and Cindy)))) Wish I had something better to say. I come here daily for both of you. Glad that Cindyis sleeping. I am sure, Elaine, that your love and Rick's are helping. Yes, there are definitely more important things that 'puters!
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I am so glad you checked in letting us know how she is. I am so in awe that you are writing and so upbeat in your posts....it helps us that are stage 4 hoping that our love ones are able to be able to be with us, if that is the way we choose, and are glad they are there....unfortunately there are always some kind of issues with something, life wouldn't be life without some kind of drama.....
Enjoy!!
Sandy
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(((((Elaine)))))
(((((Cindy)))))
Thanks for the update. I wonder if a lot of Cindy's memory issues are mostly due to meds, which could make her a little less frustrated if she knows that - I am easily frightened and frustrated by not remembering what I said or what someone else said to me or what someone else said I said.... crazy-making thoughts.... and you are probably right that the coordination issues are also due to meds. That's the down side of pain control - less time awake, less clarity of mind, less coordination. But am so glad to hear she had enough balance to get hair washed - that is a real treat when you have been unable to get it washed for a while!
Much love to all tonight.0 -
Just off of the family reunion cruise, we all made it to the ship somehow, and made our flights in and out despite terrible weather! We made nice memories. Have been checking on all of you from afar but no time to write. Love to you Elaine, and give my love to Cin, so glad you are there for each other right now. I hope the family issues are ironed out, I know this is a tough time for all of you. Love and hugs, and I will be back tomorrow when on my home computer!!! xoxoxoxo
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Elaine thanks for writing. Please tell Cindy that Barb said hello. She knows me as another Barb on reg email. Well so do you too I suppose. If she is tired of writing then I will just say heoolo from here.
Is C9indy able to g o outside at all? I know she loved doing even one thing in the yard. Maybe even a small plant to cultivate with a little fork or something would be nice. Just a thought. Love Barb Gingerbrew here.0 -
Hello Lovely Ladies, I'm so very glad to be here (have I mentioned that yet? lol *giggle!) I'm also happy to keep the updates going -you're wonderful women and if keeping in touch & sharing the struggles, laughter and a bit of humor helps anyone, you know Cindy and I are pleased with that ;-)
Linda, we've really been paying attention taking the meds and her memory )or lack thereof( as well as the coordination ... they are related. So, Cindy's more aware of that & we try not to medicate too much around important times.
My upbeat writing and being able to be able to be here ... I honestly have to credit Cindy with much of my state of mind -allowing me to blog with her and and absorb gradually what cancer was doing to her, what non-treatment is truly about and why it's right for her, how important it is to know that there are always options in medical care & to not just blindly accept the "common" treatment plan.
She also is so gracious in listening -I hope to be a better listener every day because I felt understood so then I would listen to her responses more intently & that's where the learning came in. I naturally listened more to her, which gave her someone to stand beside when others were stuck. We both tell each other how much it's meant to us to have the other through this ordeal ... I can't think of a better reason for being here, than to love. So many different variations of love, but they come back to unconditional positive regard, an understanding and ability to listen and really hear another. If I'm able to love others better, my promise to "pay it forward" will be fulfilled. =0)
I do share your posts with Cindy regularly and she's happy to hear from you all checking in and sharing, also. Our family issues are not ones that will be ironed out soon, but we talked with the Hospice Nurse today and I am truly amazed -yet again- by their unwavering support of Cindy and what's going to be needed to help Cindy live as she wants to. Did you know that Bereavement Counseling is appropriate before someone's death? The Nurse today said as soon as Hospice is involved and until 13 months after the client dies the counseling is available for those who want/need it. We'll be hearing from them tomorrow, I believe.
Hospice also has Aides and Volunteers who do different things. Aides come with supplies (personal wipes, adult diapers or panty liners, or another option I don't recall right now, alcohol pads, tape, ace bandages -in Cindy's case to wrap the PM tubing to her upper arm ... works much better than tape! and tons more stuff) and the Volunteers come to help with things needing to be done -dishes, laundry, floors, cooking, someone to read to you ... this last is something that completely relaxes and soothes Cindy almost immediately -after a couple paragraphs she's in a light sleep, after a few more she's down for the count -but I finish the chapter cuz I believe the brain hears and absorbs lots of stuff while we're sleeping.
Another thing that really helps her relax has been listening to a recording of thunder and rain made specifically for deep sleep and also music to help balance her chakras
I first heard the chakra music in massage school and knew nothing of chakras, I just liked the soothing sounds! Now I like the sounds and like the balanced feeling after I listen. Both recordings are on my cell phone (I'm going to leave an MP3 device and small speakers for her) and play in a loop. When she slept for the 7hrs she'd gone to sleep with the thunder recording -and when we were at the hspc hsptl and she got frustrated with a nurse, she looked over at me and said, "she can't take my thunder storm away" that was her safe place, in her own mind with the storm nothing else mattered right then. A little gem I've been able to give her :-) that she'll always have even when I urrrgghhh have to go back home. Well, this is really long! LOL Cindy does go outside numerous times for her "vitamin sun shine" she isn't bedridden at all, 'though it is the most comfortable place for her. She likes to help prepare things to eat/drink *but I usually do this after we decide what we're gonna eat ... and she gets the serving dishes ready and takes stuff to the table for breakfast -lunch, dinner and nighttime snack are usually on a really neat tray with legs specifically for eating in bed (my words are failing me right now, the need for sleep is catching up with me!). She'll help bring dishes back to the kitchen and maybe rinse 'em and I'll load up the dish washer. I'll ask her tomorrow if she wants to play in the dirt =o)
Love and Hugs!
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Love and Hugs, Elaine. You are a shining example of just how much love can conquer.
An enromous hug to Cindy - so she gets to see 2013 - yey! Let it not be said that you can't have new experiences, even at life's end. :-)
You are two wonderful women - your sense of humor spells courage, tenacity and compassion. This should NOT be happening to you. It's NOT justice. But you are giving unhappiness the finger. Bravo! So glad that Cindy can see the sun. Offer to read stands, Elaine!
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Elaine, thank you for your post and sharing your innermost thoughts about your journey with Cin. I've always been a little sad that I have an only child, a sensitive girl. Who will be there for her when I am gone? The sister relationship is truly unique.
I feel like your life's calling has changed because of this experience. I love what you said about listening, I need to do a better job myself. My mom (lifelong nurse) was talking about her do not rescucitate clause and how she wants to be cremated with no ceremony over the weekend and I just started to block her out. It's not what I want but it's her life, I need to listen. As the oldest, this will all fall on me, to make sure that things are handled like she asked. Cin has taught me this and has shown such strength and grace through it all.
Love to both of you to tonight and always!! Is there any thing you two need or would like?0 -
Playing in the dirt works....I cannot express to you how awesome it is that you are doing that not only for you and her but for us that I know I will eventually be at that point and it helps to see and listen to you speak about it. Glad she is up and about, getting doses of sunshine...that is important to me AND that she is up walking around although it might be tiring she needs to function and quality of life is always important....I was wondering how long is your visit going to last?
Again thanks so much Elaine and tell Cin that we anxiously await a new one!!!
Sandy
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May 2013 bring moments of peace and joy to each of us. May we all be free of pain and fear. May we all be filled with lovingkindness.
I think of Cin and Elaine multiple times each day, am so glad you are having time together, glad you are able to communicate with each other so well. I think once we accept that dying is not necessarily the worst thing that can happen to us, we can begin to embrace the idea, and it frees us up to actually savor each moment as it is, rather than wishing to change the past or fearing the future.
Blessings to all of you.0 -
I'm so glad to read that Cin is being so well taken care of and able to see the sunshine. You both are truly very special women. "Playing in the dirt" is great advice for everyone.
Hugs and love to you both.
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Another "oops" - I apparently removed this from my favorite topics by hitting the wrong link when I meant to hit "back to top" - so easy to do with fumbly neuropathic fingers.
Thinking of you every one today, keeping me in your prayers. I ask that you do the same for me today - I have a biopsy of another lump in my ALND axilla this morning. Both BS and radiologist can't tell by ultrasound if it is cancer or scar tissue. I had a little suture granuloma in this area last month, so am hoping for the same benign report. I must say I am a little tired of continuing to "monitor" - and I am still very conflicted in my overall approach to accepting or declining further treatment. Cin has been such a ground-breaker - I now feel empowered to accept or decline based on my own values and how I want to live my life. But I am still a little confused some days, and there is fear on both sides of those choices, and I am really trying to NOT live with fear. Cin and Elaine continue to help me recognize that. "Thank you" is just not enough to express how I feel.
Peace, rest, blessings today.0 -
Linda, sending you lots of good thoughts and prayers for your biopsy! Praying for benign!!
I agree, Cin is a groundbreaker and I've also learned so much from her journey, as well as that of sister Elaine. Life lessons!! It's been a few days, and I hope they check back in soon.
Hugs to all of you wonderful ladies!
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linda..
i agree with this very much >>>>>>>> Cin has been such a ground-breaker -
I hope she knows this ..
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Agreed!
Linda - I followed my "heart"/"values" and refused chemo and rads - but either way there was fear. I do hope things feel better. Either way, keep posting!
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Hello Dear Lovely Ladies,
Things are rather chaotic -there are little "fires" to put out then we'll get some down time, then it starts again, then rest. Our Cindy is a real trooper 'though! She's "sucking it up, Buttercup!" over and over again.
The Hspc nurse and Social Worker came by today and we talked about everything. Talk about memory lapses? NOT! She's in a crisis mode, where there's trouble the Momma Bear comes out and takes care of what needs doing. She's making sure her family is taken care of -at the same time making sure she's taken care of. It's exhausting her, but I'm sure you know how it is ...
Her port was changed today -but it took 3 tries to get it to flush! Third time's the charm! Her lungs were a bit wheezey, but much better than 2 weeks ago; O2 was 98% -the nurse almost did a Happy Dance she was so pleased, and Cin smiled and gently clapped ... I had to join in LOL. Her pain meds are still as she wants them, no changes. Her pain's between 5-9 the past couple days -but it's expected. The more she does physically, the more she'll hurt -but she's not gonna stop moving around. The more stress she has, the more she'll hurt -we can't do any more to reduce it, so we focus on options available and try to let tomorrow come and we'll deal with things as they come up. However, Cindy will think things through, prepared for the worst while hoping for the best.
She has been sleeping through the night much better -between 7-10hrs! I hope we can get day time things lined up soon so when I go home next week (Jan 11th) a semi-schedule will be lined up. We've got time to work on that!
Linda, I really hope and pray your results are benign! I can't wait to tell Cindy you all think she's a ground breaker! I know she'll be very pleased she's been able to shine a light on the options and paths she's found and inspire you all to seek your choice of treatment
She read your posts up to my last entry, but her eyes gave out while she was trying to read mine, so I started reading it to her ... and ... a couple of paragraphs she was sleeping, a couple more and she was down for the count ... but I finished reading .... cuz I know she hears me in her sleep :-)
Love, Rest, Hugs ... and quick test results *hurry up and wait stinks!*
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Thanks Elaine for the update....she does hear you when she sleeps....I am so glad that you have more time with her...know she appreciates and I do cause you as I said give first hand information....
Sandy
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Thanks for the update! So glad she is resting comfortably, so important! Enjoy your time together!!
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I so much admire Cindy's strength. I am so glad you are enjoying your time together. Hugs to both of you.
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*flower sits on the end of the bed, blowing purple bubbles *
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Hi Linda
Praying for you and a good biopsy result. Also sending out my love and prayers to you too Elaine and Cindy. God give you all strength, you certainly already have the courage of lions
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Hi everyone
just noticed my diagnosis info is now under my posts. Anyone know how I can shorten it? - its lines and lines long and makes me seem so ill when I know others here are much more ill and in more advanced stages of BC. It makes me look like I'm full of myself and my illness.
Tks,
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goodprognosis = good person, you are so kind to think of how you might be portrayed here to the other ladies. I don't know how to fix that line, the moderators should be able to help. I personally don't think it needs fixing, I've seen much longer tag lines and this actually lets people know about your path to today?
Just passing through to say hi to Cin and Elaine, and check on Linda's biopsy...hugs to all of you and sending strength and positive thoughts your way!
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Elaine, please tell Cindy that she is a true lioness. You are too.
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Goodprognosis, I don't think it is too long at all! It helps when people are asking, or answering, questions to know what their stats and experiences are. : )
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goodprognosis, YOUR experience is every bit as valuable as anyone else's. I vote that you not shorten it one iota on that account. We WANT good prognoses! Godspeed.
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PS: Elaine - remember that my offer stands.
I am curious about something. So Cindy is in pain but obviously it gets worse if she is active. What is a "typical" day like for her. Does she spend time out of bed? Is she having sit down meals? Does she take strolls?
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Hi Elaine & Cindy, I hope you get family matters sorted out and you live each day with less stress. It made me laugh about the CD of "wind and rain" I too listen to this as it calm's me and sends me to sleep. The only difference is every night I open my windows to hear it. When I read this it made me laugh but also cry because I felt so close to you Cindy, silly I know.
I really miss Cindy's chats but Elaine your doing a great job.
Love to everyone0
