No treatments for me.
Comments
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Wren, I checked out caringbridge.org, but in the agreement, anything you post or submit then belongs to them and they can use it any way they want to. You can ask them to remove your material, at which time they will stop using it, but they claim they are not responsible for any use prior to your asking them to remove it. So I don't think I want to use that site, even though I know several people have used it successfully (one person with a child who had a major head injury and TONS of folks were calling them constantly, so this was one way they could let folks know how the child was doing. So I think it is a great option for some, just not for me. Thanks for the suggestion.
Raykulynda, what problems did you have on xeloda? My new MO wants to try me on that, but wants to get my peripheral neuropathy improved before we start it (IF I start it....). How long were you on it? The studies I have read give only a median disease-free progression of about 6 months or so, and extends life by a median of less than a year. That is the MEDIAN, so half of women have shorter time, half have longer time, no way to know ahead of time which will benefit. So if quality of life is reasonable, it might make sense for me to try, but if it is going to make it worse, I will ask for other options (one of which is to do nothing now). Thanks.
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Good morning ladies,
I just woke up and wanted to say hi...i think I'm going right back to bed in a few minutes. I have a lot of pain today and the meds aren't working as well as they did yesterday. Linda,
There are secure sites that you could give access only to family but you do have to tell them before you start that you don't want it public and that you wan't to keep all rights to everything that you write, I think I remember it being about fifteen dollars yearly and you would own the site yourself. Elaine helped me set mine up but I picked it up pretty fast.
All my love to everyone,
I'm back to my book in bed,
cin
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Cin, thanks for checking in with us! I've been thinking about you and wondering how it is going without Elaine, and with your pain. Hope they can get the meds adjusted so you have relief! I was wondering if your bed faces the window and does it look out over the pool area? That would be a comforting sight for me - water, sky and maybe something green! A change of perspective is always good.
I just talked to my editors and they are still saying early April for this book....arghh!!! I am glad i went with a huge company for this project but the production time is driving me batty. Anyhow, you're still first on my list with a copy when it gets into my hands!!
In addition to reading, have you thought about books on tape since you enjoyed having Elaine read to you? There are lots at the library to check out, maybe Rick can make a run for you!
Sending lots of love and hugs your way!
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Cin thanks so much for checking in......think about you often....hope the pain gets under control...
Carp....what is the book about, what did I miss?
Sandy
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Hello Ladies,
As Cindy said, I'm safely back home. It's been quite a learning experience for me -to put it mildly! The opportunity to be with Cindy for just about 3 weeks is something I will always cherish. It means more than I could have ever thought it would. Thank you, again, for your support & generousity. :-)
I have a few errands that must be taken care of, but I'll be back soon to give a glimpse of Cindy's daily life and of the time we spent together.
Love & Hugs, Elaine
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linda,
Lynda
I was on Xeloda for about a year. It was the easiest of all the chemos I've had. I really had no se's and was very careful to keep the hand/foot syndrome in check, although no real problems there. I think the reason my onc. has tried so many chemos is not for progression but to "knock back" the cancer in my stomach where I have the worst problems0 -
Sandy, it is a boring Homeland Security textbook :-) Thank you for asking, somehow I wrote 333 pages in 6 months, still not sure how it all happened. I was handed a contract and knew I should jump on it, that never happens in the writing world! When it comes out, I will post a link out here for those of you are interested!
Hi Elaine, you are a wonderful sister. So glad the trip went well for you and Cindy is missing you, per her comment on the blog!
Goodnight wonderful ladies, I am off to get some rest. I've been fighting a horrible case of tonsillitis since early December, at least that's what we think it is. Going to ENT this week for a scope and some samples to see. All of the nodes in my neck are swollen or feel like marbles. Took 10 day penicillin, a z pak, and now 7 days of flagyl with no change. Along with all of the bad bacteria, it has also killed all of the good stuff in my gut and "elsewhere," quite a miserable experience. I constanly feel like I've swallowed broken glass, the only thing that helps is extra strength tylenol but of course I can't overdo that or my liver will take a hit. Last week I chocked on a piece of soft rotissiere chicken, which was crazy. The only good thing is no fever and I am a little tired, but not too bad, can get on with life, I am the traffic director of my household and can't be down, that's for sure.
Be back soon to check on you all! :-)
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Thinking of you Cindy. Elaine, glad you made it home safe and sound. Much love to you both.
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Lynda, thanks for your comments on Xeloda. Some days I am more terrified of the SEs of treatment than I am of the disease, other days I am terrified of the disease. I don't THINK I am all that frightened of dying, and I THINK I am more willing to accept the SEs of the disease more than the SEs of treatment, but unfortunately, both are bad. So I try to find the best-case and worst-case for each, trying to think my way through to embrace one path or the other. I know this is probably my last chance to "go for a cure", which is not really a "cure" but rather an introduction to life-long meds. I just have to get my head around "feel good for a few more months at least, then feel bad" with no treatment, "feel bad for another year with aggressive treatment and then maybe feel bad the rest of my life on antihormonals", or "feel bad for maybe another year, then do OK and have some reasonable expectation of having energy without pain." Obviously, no one can predict the outcome of treatment or non-treatment with certainty. Wish I had a crystal ball.
Cin and Elaine, so glad you had such a wonderful visit. We are so glad to have you here.
Carpediem, way to go!!! I am impressed - how did you manage to get all that written? I think I am just not very well organized or else poorly motivated - inertia sets in - I have several things I need to write (a couple of historical articles need to be revised, other articles based on studies I have done.... just sitting there....).
Hoping you are all free of fear, free of pain today. I am having many moments of grace and joy today. Much lovingkindness to you all.0 -
carp well I will say I am impressed and that takes alot, for them to contract you to write such a book says alot....wow...333 pages.....thanks...
Elaine can't wait to hear a status on Cin.
Sandy
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Linda, thanks so much - I need to write a book on how to tackle this kind of project - many lessons learned, for sure! I am passionate about the subject and love to write, as well as being hyperorganized, so those are probably the keys to success. I was thinking about a side career as a coach - organize and help motivate other people to write and produce. Many write and never get to publication because they hit a wall and never go back to the project. Anyhow, I think I am moving on to fiction, that is also on my bucket list, which I am plowing through before life takes any more weird twists and turns :-)
Cindy, you should write about your repo experiences, I've watched that TV show a few times and wow - I'll be you'll seen your share of crazy things out there!!!
Love and hugs to all of you
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I wish I was a writer cause I would love to write a book about all of it, lol!!
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Hi Cindy, how are things?
Please tell me you have looked into getting help!
I'm working part time and looking after FIL who is ill. Went to docs today and he said he would get palliative care to visit. So he has problems breathing and also think cancer in stomach. I spoke to the doc on my own and said " tell me how it is" he said he thinks months .
They have found a smaller house but can't sell there's. I was thinking of speaking to the estate agent and getting them to reduce the price, if he tells them to the mum will.
Also do I tell DH's sister about the time scale? She is very depressed, drinks like a fish and smokes like chimney. Also is very overweight and comfort eats( lives on her own)
Spoke to the aunt and she thinks not to tell her or the mum and dad?
What do I do???
Any help would be great, my DH is as much use as a chocolate teapot.0 -
Dh's sister has as much right to know as DH, despite her problems. What does her being overweight and overeating have to do with not telling her her father is dying?
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I see where you are coming from! I love my SIL to bits but she will comfort eat herself to death and drink two bottles of wine in an hour. Have spoken to the aunt and we have both agreed to tell her. She suffer's from bad depression so we were very worried for her.
I have nothing against people who are over weight.0 -
Dear Ladies,
First I'd like to update you on Cindy's health, then some of our time together -I think you'd like it that way.
Since I left, she got an Xray of her chest which confirmed she has severe pneumonia. They've put her on Levaquin for it -she says, "They're bringing out the Big Guns!" Her muscles everywhere hurt and her bones, she says the bone lesions, feel like someone has punched through the muslces and bruised the bones. She's pretty much staying in bed except for the bathroom and cigarettes -she's not going out in the cold for these now, they've opened the big garage door a bit, so she can go to the garage (attached to the house) for these little fixes.
Her doctor was going to change her pain med from Dilaudid to Fentanyl while I was there -and we were in the new Hospice facility- but since she was so anxious, she asked for more Ativan. They gave it to her & as she calmed down, the pain eased up. So, she's on 2mg of Ativan every 4hrs. The Fentanyl is going to be in her future, because they (both Cindy and the doctor) have decided that she's feeling "opioid-induced hyperalgesia" basically maxed out on the Dilaudid and it's having a reverse effect ... making her hyper sensitive to the pain. Her dosage is still the 28mg on constant drip and the 24mg with the button every 30mins as needed. The Dilaudid has not had to be increased in just over 3wks.
A Pet Scan is in the works, awaiting Insurance approval. This scan will do a couple of things. First, tell us where the cancer's gotten, and second, possibly allow a new class of pain meds to be used -if the cancer's gotten into her bones. I don't recall the names of the meds, but one of them is a chemo, but in this case not used as curative measure, but a palliative one.
So, I'm going to close this entry on that note. I'll pick up on the daily life next.
Cindy and I are so very appreciative of all of the support and love you have all shared
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am I am appreciative that you keep updating up Elaine....
thinking of you Cin
Sandy
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Thanks Elaine for the update. That's what I come to this thread for. Send Cindy my love. Palliative chemo sounds like a good idea if it can ease the pain. That's creepy about the Dilaudid. Yikes! Pain medications still don't seem to know a lot about the human body, it seems.
Can't wait to read your next post. Please tell Cindy I sent her a PM on the BCO system - don't know if she has logged on to see it yet.
Hugs,
"A"
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Thank you Elaine, for letting us know how things are going. I'm so sad that they can't do a better job controlling her pain. I think of Cindy everyday. I wish I could take her pain away and just make everything better. Much love and hugs to you both.
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So, you'd like to know what a typical day for Cindy is? Well, while I was there ... In the beginning we jumped and played and did cartwheels -no? you're not buying that? OK, reality. When I arrived, Christmas night, I couldn't see her. She was in the Hspc facility. So, I went to bed. (Crazy day, I'll explain later over in the blog) The next day, Mom and Rick took me up -about 35mins from home- to see my Sunshine! She was talking with one of her nurses and asked that we leave them and they show me the Hospice facility -and when Cindy says it's nice, she's not exaggerating! It's just like she explained, open layout, kitchen in the center, living room area with fire place, big screen tv, book cases filled with books, and large rooms around them. Mom and Rick pretty much said hi, how are you? do you need anything? then dropped me off. This day, Cindy stayed in bed almost all day -she seemed chipper enough, excited I was there -getting up to go outside to the huge, nice patio with the bbq grill and bench to smoke occassionally, to the dining room table (long table would likely seat 20 people)to eat breakfast, or to the bathroom. Other than that, she rested in the bed and we caught up. One of the first things she said was that she may not look like it, but she was very happy I was there. "They had taken her emotions away." So, she doesn't get really happy or sad or worried. She appears neutral regardless of how she feels. She doesn't grimace in pain, or even smile often, but she's activelly engaged. It's disconcerting at first, but I got used to it easily enough. We'd talk for a while, then she'd sleep. Wake up and talk, then sleep.
The next evening, we went home; didn't do too much, ate dinner & went to sleep. Sort of. Every few hours, she'd be awake for a couple hours, then do it again. So, throughout the night we'd be up and down. Daytime, she kicked into overdrive! Up, making coffee, out back for a cigarette, back in for breakfast, help clean the kitchen, then back in bed but sitting up doing word finds and listening to the tv. Finally, dozing for a few hours. Bathroom, lunch in bed, supervise me watering her plants, word finds, dozing. Outback to smoke, bathroom, hurting from doing so much so ate dinner in bed, chat, word find, doze with the tv on.
The biggest shock to me, was that her days typically began at 5am. Mine back home, generally 9-10:30, unless I was working. Her nights, time for bed, 6:30-7pm; mine back home, between 11:30pm-1am. But outside of giving her medications around that time frame, rarely did we sleep for more than 4hrs at a shot. Seriously. Sometimes she'd finally fall asleep doing a word find sitting up, and her chin would fall to her chest. So, I'd lean her head back and/or recline the bed which may wake her back up for an hour -or she may be so exhausted she wouldn't feel me move her or the bed and sleep for a couple hours.
I stayed within ear-shot of her almost the entire time I was out there. She didn't need me to help her in/out of bed or her wheel chair, or feed or bathe her (though I did wash her hair at the sink) -she's still independent that way. What I did need to help with was giving her meds as scheduled. She gets confused about when/if she's taken which meds, and if she hurts she'd take the next dose a little early ... which could compound rapidly and get messed up. I'd also help with clarifying time periods for her and when talking to the Social Worker & nurses that came to the house.
Sometimes, Cindy's memory just isn't clear. The biggest event for her happened the first day I arrived. Her doctor had come and talked with her for about an hour. Shortly afterwards (a shift change) the hspc nurse asked if the doctor had been by yet & she said no. the nurse checked the records later and told her he had been in, did she remember xyz? she didn't. then the nurse asked specific questions about details she'd been given by the doctor and some of the visit came back to her, but most didn't. This really bothered her a lot. We thought it may've been the meds, not sleeping regularly, the pain.
Through out my stay, Cindy would sometimes forget/not recal little, non-important things, other times forget to ask a nurse about supplies that could be delivered from hospice, or when the next visit would be to change the Dilaudid or tubing for her port. Towards the end of my visit, Cindy's awareness could fluctuate in the span of a couple hours. Approval/Refusal for Narcan was a big issue for a day. It's been available at the Hospice facility since she's been on the Dilaudid -because the dosage is so high, in case of emergency. Cindy does not recall this at all. I wasn't there initially, so the nurses may not have told her, or she may not recall it. Either way, with the talk about changing to Fentanyl, the pharmacy required Narcan to be available in case -while switching meds- the conversion was off, they could use the Narcan to bring her out of an overdose. Cindy says absolutely not. If she goes into a coma, accidental or otherwise, she does not want to be brought back. If, Cindy refuses the Narcan, some pharmacy's protocol would be violated. They could contact another pharmacy, or just need a doctor to sign off on the request, and it could be a non-issue. But, one of her hspc nurses talked to her, and said it would only be used if she was not actively dying, and she later agreed. This is a huge issue for there to be questions about.
So, much of the time, if you talk about the present there are no apparent concerns. But, when looking back, the little things tend to add up. Time will tell. Money is truly the biggest worry -please PM me if you'd like more information. The most important things are still constant: unwavering love from family and friends. I believe the time we shared together was at the best time for Cindy. I feel very fortunate to have been given this time with my sister. I feel as if the time we had was meant to be; coming home felt right, and oddly with no regrets. It's almost like we were pulled together physically for a purpose and once that was met, it was ok to go on. I feel at peace.
So, that's a nutshell recollection of the visit. There was a good deal of reading & listening to "thunderstorms" peppered throughout, too!
Love & Hugs, Elaine
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Elaine, so glad to see your posts, so glad you were able to spend this time with your sister. Thank you both for sharing so much with us here. You are 2 very special people. Keeping you both in my prayers.
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*flower sits on the edge of Cindy;s bed, smiling ,crying and blowing purple bubbles, watching everyone joinning in on the picnic...*
you remind me so much of my mom Cindy...
thank you elaine.
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Here's a link to Cindy's latest blog :-)
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Stopped by and wanted to say hugs and hello. Elaine, I know you must wish yourself back to her side, had to be hard to leave. Oh to have someone who would be there like you were and still are for her.
Ali, the chocolate teapot, I would eat that. Love the English references. I think the daughter has every right to know. Her not knowing denies her interactions that may be needed and opportunities for life changes and in giving of herself. That's my opinion. Here we cannot trust DH's parents to tell us anything on if they are or are not, they want to go with no funeral, no fanfare and for family to be called later. Kind of hard w so many grandchildren always over there, but they have let a few grandmothers slip out of life and not told for two weeks after burial. Hit Hubby hard.
Carpe, congrats on getting the book out there. My DD will definitely be interested. Yes, the waiting time for publishing is like giving birth, you are in the labor arena now, when it is all out of your control and you are waiting for that book to pop out of their 'press' for you.
Cindy, thinking of you. By opening your experiences and feelings up to everyone, you have offered a gift to us and in it we will find wisdom and support for all our lives. Thank you.
LOVEEssa
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Thanks Elaine!!
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I'm up early this morning to get washed up for my nurse to visit and change all my tubing on my pca and port and order whatever meds are needed. I'm getting very frightened that the pain now is just getting worse and even though I have some days when I'm in a better mood I know the pain will never get any less. iIve been trying so hard to get back to writing in my blog every day but some days I'm in bed all day with too much pain to work on putting two thoughts together. I'll do my best to keep trying. It's so nice to have so many wonderful friends here to talk to who understand and truly care about each other. I love to see new people here who are looking for somewhere to fit in, I really had no idea there were so many who don't want more treatments unless it's for pain. I wish everyone the strength to go in whatever direction they want to go. Thank you all for the support that you continue to give to me and each other.
All my love,
cin
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good to hear from you cindy...
what about "recording" your blog and getting someone to type it out?
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Good morning, Cin, and all you other wonderful women.
Cin, I can feel your discouragement. I have no concrete suggestions, but I am here to listen, here to send you lovingkindness. Do you have some good videos to watch on TV? I find that if I am distracted, I forget about feeling so bad. Sometimes it is funny and I laugh, sometimes I choose something that is an interesting non-fiction type program, which usually puts me to sleep, even though I am interested in it, so it provides a little escape from reality. (((((hugs)))))0 -
Cin thanks for checking in, you want to talk about where the pain is? That is a good idea record it on a mini tape recorder....you are helping so many people and me myself, I will quit treatment when the quality of life is not what I want or think it should be and will take meds for pain that is all....I have trouble taking meds for the pain in the bones now, the dr. and friends are yelling at me telling me to take it, but it is tolerable, but do....
Hang in there...
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Hi Cindy...thinking of you..
Eric...also in Peoria....0
