Nov 27, 2012 11:55AM , edited Mar 21, 2014 10:35AM by goodprognosis
Posted on: Aug 6, 2012 09:47AM
I've already had chemo twice for bone cancer when I was much younger so when I was told that chemo would only possibly give me a little more time but most likely the SE would do more damage than the bc I declined to have any treatment at all. I'm on Hospice now and only treating the pain. I was diagnosed at stage four, but wasn't told about it for months after seeing two different oncos. I was suprised a few weeks ago when I was told by my doctor when I told her that I thought I would be around for a long time she said "I don't think you are going to live more than a few months". I guess I thought that I had more time. I'm perfectally fine with my choice and I feel like I've been living on borrowed time ever since the first cancer(not related to this bc). And now I have a progressive lung desease (UIP) that is making it very hard to breath. I won't have any scans to see if I have more mets than I had before because I figure it would make me hurt more to know for sure. I did have surgery to remove all four of the tumors in my breast and my lymphnodes in my arm and chest but that's as far as I'm willing to go. I thought i would see more women on here who are Hospice but it's looking like it's usually family members of Hospice patients here. I see a lot of women who are in stage four and doing well on meds but I simply don't want to take any. I'm not depressed at all, in fact it's a relief to me to be almost done with all of this even if I die from it. We all go sometime. I want to see if anyone else has refused all chemo and rads and decided to just let nature take it's course.
Posts 151 - 180 (1,168 total)
Nov 27, 2012 11:55AM , edited Mar 21, 2014 10:35AM by goodprognosis
Nov 27, 2012 03:05PM ali68 wrote:
Lora, what lovely words and put so well.
Cindy, my dear friend I hope your pain free now and eating your chocs.
Nov 27, 2012 03:47PM pallir wrote:
I am glad that you are our friend. All of "us" here are sad that you are hurting. We hopr and pray for your pain to go away and for you to get really good hugs - but that they don't hurt when you get them. I am glad that you understand what I say.
God bless you,
Nov 27, 2012 10:31PM ElaineForCindyRose wrote:
I'm ba--aack :-)
I'm still trying to process how fast things seem to be happening, all of a sudden it seems to me. Yesterday Cindy asks me to take over the blogs, and we planned for me to call daily -we were gonna line up what time would be best- and I'd post here and on Word Press to keep the family updated. I called a little while ago, talked to Rick for a few minutes then asked for Cindy. He said I was taking my life into my own hands, I told him I'd risk it ;-)
As he's entering the door to the other room, Cindy asks him for her overnight bag. He asks, you're going somewhere? She says, yes, for a couple days. Rick's a bit surprised & hands her the phone telling her it's me. I asked her where she was going, she says the hospice hospital. I told her Rick hadn't said anything & she said that the hospice nurse was with her & they just decided she needed to be admitted. The hospital is about an hour away from home -that's really unusual for her. They've got hospitals within minutes from the house & she prefers to go there because they know her & have her history, etc ... I ask why so far away and she says that this is a hospice hsptl where there are hospice nurses on duty 24hrs a day & the doctors are there, too. The hsptls locally would be like nursing facilities with nurses there but the doctors are on call -so if something happens during the night she can receive the appropriate care promptly. So, that makes sense. She said they're planning on just a few days to get her pain under control, then they'll let her come home with IV meds. Then I let her go, to finish up paperwork with the hospice nurse & head out.
On the plus side, Cindy usually likes getting away from home ... calls her hospital stays mini-vacations. They keep the temperature just right, they clean, cook & feed her what she wants, she gets control of the remote for the tv, and the beds are the best! She likes the old hospital beds -not the new ones filled with air that you adjust. She told me last night that she's not been able to get comfortable anywhere -bed with pillows or whithout, couch, recliner ... nowhere. She was truly looking forward to the hospital bed being delivered to her home today. She gets the hsptl bed tonight :-)
I'm not completely sure what you guys don't know, so I'm gonna tell you what she told me last night; my apologies if you knew already. This may help understand why I feel like things went in fast forward. Here's the re-cap.
So, we started with the holidays ... she said she really didn't want to decorate for Christmas this year (last year she was in the hsptl for Christmas) because it reminds her what she cannot do. She had a little help getting someone special a secret present -you could hear the happiness in her voice! It's gonna be wonderful!
She had a talk with Mom about the current state of her health. It couldn't have been easy. Mom's been trying to do what mom's do, everything to stay alive longer ... etc etc etc .... Cindy's been really clear about not having radiation/chemo/more surgeries with questionable outcomes: she doesn't want them. Period. Mom *I love her dearly* is now on board ... Cin repeated that there's no point in further surgeries, that even the surgeon's say it's too dangerous & there's nothing to do that will stop the cancer's growth & there's nothing Cindy can do to control it. It's not in her hands. Then they went on talking about other family ... blah blah blah.
Cindy told me there was only so much "butchery" a person can handle. I was a bit baffled, so she ellaborated they'd taken/removed/amputated her appendix, gall bladder, leg, lymph nodes, and breast. I was briefly surprised not having remembered all that!
Cindy was excited about Rick being able to look for work -finally, how the workman's comp case was going to close soon (although no matter what money they get in a settlement, it's not worth the crap over the past years. He's been hurt while she's going thru cancer ... he jokes that she's trying to one-up him with the doctors, she quips back she's sorry she's stealing his thunder :-) When they go to the doctor appts -either hers or Rick's- the nurses and doctors always flock to her, grab & hug her and ask how are you honey? The doctors sometimes kiss her forehead and are really touchy feely ((that is not Cindy's way -so not a "Feeler")) They ask How are you feeling and she wants to answer, "I'm not dead yet." She says people often think people with cancer get pale, have dark circles under their eyes and look terribly sick ... I admit I thought that, too. She informed me that's only in the movies. I didn't know.
Well, I'm heading for bed. I am looking forward to meeting you all as I read the thread in the morning.
Nov 27, 2012 10:49PM , edited Nov 27, 2012 10:52PM by cookiegal
It sounds like Cindy has made a good decision about her care!
I really had not read this thread in a while, pretty amazing cin regularly posted to my thread about my friend even while she had so much to deal with.
She's the best!
Nov 27, 2012 11:38PM desertstorm2014 wrote:
Sending thoughts and prayers to Cin tonight, hope she is resting comfortably! I laughed about her "not dead yet" comment- I know a few real life spies and that is how they communicate back in short hand - NDY means they are still around. Nothing more needs to be said!
Cindy is amazing and we all love her, thanks Elaine for passing our thoughts along! Hope she is sleeping in that comfy hospital bed tonight:-)
Nov 28, 2012 12:30PM Linda-n3 wrote:
Elaine, thank you for being the best sister! I have one sister very much like you, one I can depend on to support me in my decisions without question. My mom and other siblings are great, but really don't "get it" when it comes to saying "enough already!"
I am so grateful that I was able to talk with Cin this week - I had planned on visiting her as I am traveling near where she lives, but she wasn't feeling well, I wasn't feeling as well as I needed to in order to travel, so we talked on the phone. She is a wonderful woman, an inspiration, and I am so hopeful that she can get some pain-free rest. Peace to Cin, Elaine, Rick, and all the rest of your family.
I am enjoying my 30th anniversary trip (had to delay for 6 months due to stupid BC and SEs). Facing biopsy of new lesion the day after we get back, so trying not to think about this now, just enjoying being present with my DH, exploring new hiking trails and experiences as we did when we first met, just can't cover as much territory now as we did then. Of course, some of it is just age, can't blame EVERYTHING on BC!
Nov 28, 2012 12:39PM 1Athena1 wrote:
Elaine, thank you for the update. I have a question - is Cindy still able to see our responses here or is her access to a computer limited?
Nov 28, 2012 09:00PM ElaineForCindyRose wrote:
still "not dead yet"
I spoke with Cindy this afternoon and read all your messages to her & she was glad to hear from everybody. She does not have access to the internet but will be home in a few days & will be able to see them then.
Cindy's managed to do things in an amazing way -this mini-vacation of hers is being done in some serious style! The hospice nurse said she'd be comfortable here & she was right. It's like a real resort ~she said to picture a condo complex complete with driveways with older people around & the Hospice Hospital is in the middle of them like a great big clubhouse. There are huge common areas, the dining room has a table large enough for 18 people and smaller seating areas, too, and there are large rooms for patients -and the rooms are fantastic too -not an old fashioned hospital bed but a sleep number adjustable bed (she loves it) a really nice leather recliner, big flat screen tv, and space for someone to sleep in the room, too. There's a patio with an umbrella covered patio table, chairs, and lots of green plants and flowersand a BBQ -"a party waiting to happen." She's even gone outside (and dare I say it, smoke a cigarette). She told Rick to stay home & not drive back and forth -she said she'd rather just relax, get the pain under control & head back home in a couple days. She didn't want to visit with people, she hates people & they p*ss her off -so she just wants to stay away.
The nurses here are treating her really well. One nurse asked if there was anything could do to make her more comfortable and she said get her 8 pillows -he looked suprised, smiled and came back with 8 pillows!
Cindy ate some today! She had a couple pieces of baked chicken, a couple bites of mashed potatoes and 2 really small brussle sprouts & they baked her cookies! Like the otis spunkenhymer (sp?) chocolate chip ones! It was about 1/4 of the food they brought her but she hasn't felt the need to eat lately -no hunger pains, just doesn't feel interested in eating, like her stomach is overfull. She's not been thirsty either, but she had cranberry juice and water to sip on .... but the only time she's drinking much is when she takes her pills. She hasn't slept for days, she hurts & cannot get comfortable -most of the time she feels like she's been beaten, not like she's sick
So now for the medical stuff.
She met her doctor, he's Jewish, and she told him "Be straight with me. I want the truth, cuz this slow painful death aint working for me." He looked at her and said, "I get you. I don't want to scare you, but with the pain in your chest, the cancer's likely to show up next in your brain or lungs. You'll do ok for a while, then get sick all at once. Then, within 4 weeks ..." it's over. He measured her tumor -from the outside- and said "Oh, dear God. That's gotten a lot bigger." Needless to say, Cindy likes her doctor. He's honest with her.
The plan, per the Medical Director of the Hospice Hospital, is for Cindy to get a PCA (a portable IV pole with a pain pump holding pain meds -in essence) to take home. The pain medication being used is dalaudid (sp?) -which Cindy said is the strongest pain medication out there). They will be working on getting a good doseage, which she will be the one to determine, then she gets to go home. The meds will be continuously administered and she will also be able to self-administer an extra dose at 30minute intervals as needed.
In conclusion, I may have mentioned (not for the first time) what a fabulous incubator Cindy is -for cancer. She said she's thought about donating the cancerous parts of her body to science, cuz then they'd pay for the funeral; but they couldn't have the rest of her. She mentioned the pain again and I said that it sucks to be you -in such a loving way. She says there are perks! She gets to check out early & she's met some really great friends!
May you each find rest, comfort & peace
Nov 29, 2012 05:04AM Moderators wrote:
Thank you, Elaine! It's good to know that Cindy is getting such great care. Your reports are so filled with her character (and yours) that, for such serious news, they're a pleasure to read.
• The Mods
Nov 29, 2012 07:07AM exbrnxgrl wrote:
Thank you or the updates. I'm no doctor, but fentanyl is a pretty powerful pain med and worked better for me than dilaudid. It might be worth asking about. Thinking of you all.
Nov 29, 2012 09:08AM ElaineForCindyRose wrote:
I don't have any news yet -but was checking the boards. I'll be sure to mention fentanyl to Cindy -I think I've heard her mention that one before -thank you for caring enough to make sure she thought of optional meds that pack a punch!
Taking care of the updates for Cindy is really a special thing for me. Last year, when we started her blog on word press, it was with the intent of putting information in one place so our family could have access to how things were going -without someone (or multiple people) having to make phone calls to everyone --and when I say everyone, I'm not talking about a handful of siblings & cousins & aunts & uncles, there are 11 siblings & easily 6 aunts & then cousins galore! So, after Cindy made the initial phone calls to everyone after "the diagnosis" and she had to repeat everything, tell them she tried x,y and z, they're planning a,b & c, no, she doesn't want to die but she's not doing chemo again, over and over, the blog was really the best option. Most all of the family is on FaceBook -some much more than others =0) -so we could link to it there, or just let them come to WP when they were ready for more news. It's tough getting phone calls, hearing crappy news and just want to hang up because you don't want to hear any more right then; but the blog allowed people (myself included) to absorb the information in easier pieces. We -the family/friends- had the option to come back later if it was too much for us at that moment. Cindy doesn't have that luxury. It took so much out of her making all those phone calls, I imagine you can relate to that. We made it clear that we weren't going to be pulling punches, we were going to be straight up, we were going to to write about the good days but that there were gonna be days that were crappy and those were gonna be there, too. If reading it was too much for you -don't read it. But don't complain later that you didn't know what was going on or someone told you this when she posted that. The information wasn't diluted. It was real.
What we didn't realize, was that so many other people would find her blog and be able to relate to her situation. She has this way of talking that is, caring and honest, but it "aint sugar coated"! People seem to crave and need to hear other people say what's happening to them, kind of showing a path where they've gone, so others may have an idea of what's ahead, or if they've been there already realize they aren't alone. The women Cindy has "met" and become friends with are truly amazing -each in their own way. The really fantastic thing -and this is huge- is that there's no judgement from anyone. Everyone respects that these are personal life choices, what's good for one is an option that may not be right for another. That open acceptance is a large part of what's kept Cindy blogging. Many have helped her, she's helped many, and it was an outlet for her to voice what rattles around in her head.
These BCO boards are such a blessing. I thank each of you for being there for Cindy -and me- and hope that our entries can lend a bit of hope in moments where you may need it.
Nov 29, 2012 12:06PM Linda-n3 wrote:
Caryn, it's nice to see you here - have thought about you often since last year's surgery group.
Elaine and Cin, special prayers as you get the pain under control and get Cin back to her blogging. Elaine does a great job, but we also miss you "in person". Nice to hear from BOTH of you. You are both gifted in how you word your posts.
Nov 29, 2012 12:12PM 1Athena1 wrote:
Elaine - thank you for your wonderful epistles. Like your sister, you have wonderful energy and a great sense of humor. I do hope Cindy is able to return home soon.
BY THE WAY, I wonder if you noticed that a sister started a thread for Cindy on another forum. It is a flower shower. Here is the link:http://community.breastcancer.org/forum/135/topic/796851?page=1#post_3316936
Hugs to both of you.
Nov 29, 2012 11:12PM ElaineForCindyRose wrote:
just a quick note, more details tomorrow -cindy's getting better regulating pain meds ... it was nice chatting with her before lunch -then i called back after she ate and she was a bit loopy. we had a good time laughing =0) i won't go into detail because she'll be reading this LOL and she asked me not to. let's just say, she wasn't thinking about pain much!
Athena, i tried to post a couple different pics but couldn't figure it out ~would you send me step by step directions, please? thank you.
I'm really happy that you all don't mind me writing for Cindy. It makes me feel like I'm helping out ~and that's really important to me -thank you all :-)
Nov 30, 2012 07:52AM ali68 wrote:
Sounds like Cindy is getting on top of the pain hehe
Love to Cindy x
Nov 30, 2012 09:31AM ElaineForCindyRose wrote:
Another Truth -that's stranger than fiction, in Cindy's Life
So,this is from my talk with Cindy yesterday afternoon. I've known how much I admire Cindy's complete openness, no sugar coating things, 'just the facts, please', and her absolute conviction in how she wants to be treated with this cancer -especially as it progresses. Cindy had to refresh my memory about our writing and talking to each other, and she did it so kindly. She said that there's no beating around the bush, especially here. Example, to clarify what her doctor said, the more straight-forward way to put it is like this: most likely, before she dies, she'll be doing alright then she'll go downhill fast. She won't know what hit her, then she'll die. She says it's important. I believe her & in her. She went on to say that we should love her while she's alive -not cry. The world's not gonna end. Things are just gonna change up for a while. Then she lightened things up seamlessly saying when she dies she wants us to send her off with a picnic basket, because it's gonna take them a while to explain things. ((I was clueless about this last statement & she says there's a book, The 5 People You Meet in Heaven, and basically they explain your life to you -and she says it's gonna take a while, so she wants a full picnic basket :-) )) I love her ability to be absolutely honest, teach you that it's ok to use the word 'die', get used to it so it isn't a word you're afraid to say, it's really ok.
So, enough of that! Cindy got lots of exercise yesterday -once the pain meds start to work, she gets like someone on crack with energy. She walked around in circles outside with one of the nurses about 30 times, wasn't tired -she was wired! LOL I thought well, good, you got lot of fresh air!
OK here's a test to see how well you know Cindy! Could this scenario be true:
Cindy is at a restaurant. There's a family nearby with grandparents, parents and young children. The children run around, being kids, laughing and talking with each other. Would Cindy go up to the parents and tell them 'thank you for being a good parent, I really appreciate it. Your children are respectful, beautiful, responsible for their little bodies's actions, and they're playing and laughing without being loud. I really appreciate you being a good parent.'??
Umm -yes! She says "they're making me nice, dammit!"
I read your comments to her and she said:
-fentanyl gives her crazy hot flashes, makes her heart race and that it releases too much too fast for her -but thanks!
-Jenni-she's more than willing ro share her address with you & anyone else who would like it, just pm. (if you already have her home address, that's the best place to send things -she's going home in a couple days)
Thank you all for your kind words and encouragement. I'm gonna call Cindy now & see how her night went!
Nov 30, 2012 09:49AM leggo wrote:
Elaine, I wonder if Cindy knows how much she's helped so many with her blog and her posts. Please tell her what a difference she's made. Please pass on hugs and kisses from me. A special thank you to you for posting updates.
Nov 30, 2012 10:13AM , edited Nov 30, 2012 10:13AM by CelineFlower
Elaine... thank you so much for this..
and pls tell her i loved the picnic basket request... and would love to knw what she would put in it..
i hope she knows that her flower shower is continualy flowing to her..
Nov 30, 2012 11:42AM ElaineForCindyRose wrote:
I had a quick talk with Cindy a few minutes ago, she was just finishing breakfast -eggs, bacon, 2 small pancakes & whole wheat toast with coffee. I'm thinking she's eating a bit better!
She did have to fuss a little bit at an aide this morning. Cindy was trying to clean up her breakfast dishes and the aide came over to do it -but Cindy said that she's there for them to help her not wait on her hand and foot- and another patient needed the aide's help. Apparently the aide chose the wrong patient hehehe. Cindy had her go take care of the other patient while she cleaned up after herself
She's been going outside a lot and believes that the sunshine has been really good for her -the vitamin D deficiency may be causing some of her pains.
She has the portable pump that provides the Dilaudid continuously; still working on the quantity. They are also giving her Atavan to counter the hyper-activity she gets from the Dilaudid. Cindy says she may go home today, but she'd feel better getting this worked out today and go home tomorrow. She says it's the right medication just gotta get the quantity right
I'm going to call her later -but I've a busy day ahead of me, so I'll try to post again when I can.
Hope it's a nice day for you all!
Nov 30, 2012 09:49PM 1Athena1 wrote:
Elaine, once you find the url of a picture, click on the tree icon in this box and paste the link there.
Tell Cindy that I am awed by her. That she is an inspiration, and that she is really a star - don't know how else to put it. I will remember her wit and yours for the rest of my life. That sort of wit spells courage, intelligence and wisdom. I am already missing her.
Picnic basket for Heaven? Hmmmm.....may I offer the following to being with...
That is for starters.
Nov 30, 2012 11:27PM LuAnnH wrote:
I just happened upon this thread and wanted to send my love to Cindy. You sound like such a wonderful, fun, loving person to know. I had to crack up reading the statement that the pain meds are making you nice! LOL That was so funny.
I really respect your choice to not take tx and allow things to take their natural progression. I remember after I finished tx for my breast cancer in 1999 and swore if the cancer ever returned that I would refuse chemo and take my quality of life over quantity. Needless to say in 2006 when my cancer returned I was first in line for tx. I was not brave enough to say no. But I also am raising my 4 children alone, my husband passed away in 1999 while I was in chemo. Knowing I am the only parent left for my 4 children I felt tx was my best choice. I found out that tx was not nearly as bad as I thought it would have been but it has it's downfalls just the same.
I am really glad they are getting your pain under control and your hospice hospital sounds like a wonderful place to go to!!!! I'm ready to book the room next to yu as I was readinging the description oof the place. I respond to dilluad very well also and it probably is a good choice over the fentanyl, simply because IV dilluad is so much stronger than the pill form. A friend of mine was given dilluad via IV after a surgery once and now we both joke around that getting IV dilluad is our personal vacation from the world! LOL
I hope you get home soon and have some wonder quality time with your family over the holiday season.
Dec 1, 2012 03:44PM ElaineForCindyRose wrote:
Hello Beautiful Ladies,
I have talked with our Cindy, aka Sunshine, and she's doing better but still not ready to go home. The doctors are using atavan and soma (maybe?) to counter the hyperactivity the dilaudid causes. The correct quantity and mixture of multiple meds has proven more difficult than anticipated -occasionally she's dopey, sleepy, super-hyper, agitated, stoned (her word) and her memory has lapses. But she's getting up going to the dining room eating, drinking, getting outside for fresh air & be taken super good care of. She's not happy that there aren't more places like this for people. Mom & Rick visited with her yesterday and Rick's with her now.
I love reading your comments, the picnic basket looks perfect & I will try the url directions (thanks)! and LuAnn your story is really going to touch her heart. Thank you.
Dec 1, 2012 04:11PM harvey wrote:
I just fell over this post, i havent been aroung that long. I only go to the hospice as a day patient
Just ot wish Cindy all the best, I'm glad she has the hospice to go to when neaded - and hope she gets hope soon.
I hope when the beast gets so strong it ruins my days - I'll be as strong as Cindy.
Dec 1, 2012 07:06PM LuAnnH wrote:
I have a suggestion that may be worthwile to help with pain control. I have an internal pain pump that pumps IV dilluad into my spine to control my spinal pain. Lately the pain has been continuing to increase and my pain doctor suggested to possibly put chlonodine (not sure if I spelled it right, but it is a blood pressue med) in the pump with the diluad. He explained to me that the blood pressure med controls the way the blood vessels expand and by controlling them with the chlondine and using the diluad for pain it can possibly control the pain with less narcotics. It may be something to look at. I go to a pain management clinic to manage my pain so they have more ways to work with pain besides fill you with narcotics
Dec 1, 2012 09:24PM pallir wrote:
Hi Cin and Elaine,
I wish I could give a hug to you both. . . for you and for me . . . you are a blesing to me. Hope you are feeling less pain . . . and are enjoying your time with loved ones.
God bless you, sweet sister,
Dec 3, 2012 01:54PM Linda-n3 wrote:
Cin and Elaine, I just got home from visiting the beautiful state of AZ. I was sorry to miss meeting you in person, but am so glad you are getting some pain relief FINALLY! Now I am trying to catch up on the mail and voice mail -ugh. Good news today is that I just needed a prescription change for my eyes - nothing more major than that and I should be seeing better soon! And tomorrow I have another biopsy - hoping it is just a suture granuloma from the excision in October. Hugs to all the rest of you here. I can't believe it is December already!!!!!!
Dec 3, 2012 10:01PM ElaineForCindyRose wrote:
hello dear women,
Cindy got home about 30mins ago!!!!
She's happy but exhausted, she's sweating after just getting in the house and starting to unpack her few things. Gonna go out back for a cigarette then is getting into her hospital bed with her book & try to get some rest.
I'll be working til at least 7pm (EST) and it'll be after that before I can post again. Cindy said that was a good thing as it would give her the day to rest.
I'm looking forward to her being able to read her your posts & get her thoughts back to you.
Hopes for wonderful day =0)