No treatments for me.
Comments
-
Thanks for the kind words everyone. Believe it or not, I got results back tonight: malignant. I had already scheduled an appointment with a new MO as I just wasn't thrilled with the one I have had since this stuff started in July 2010. So I will get a fresh take on the whole thing and see where we go from here.
I got the book "Can't Wait to Get to Heaven" on my Nook and have been cracking up as I read. Thanks to Cin and Elaine for the book suggestion! I will probably read another one or two by the author - easy, fast, entertaining, funny, also depth of characters and philosophy, all rolled into one. I am grateful to have the energy to be able to read for myself. I always loved it when my mother read to me when I was a child, and once in a while DH reads something from a magazine to me. I think this is a really great gift.
Today I took a class in batikking (? spelling??), something I have never done before. It has a lot of steps, get the outline done, apply wax in some areas, paint, dry, put some more wax on, paint some more, dry.... etc. for about 6 rounds, followed by more wax, wrinkling of the paper, some more paint.... finally removing all the wax by ironing between newspapers. My piece wasn't too bad considering it was my first. Art is something that keeps me so "in the moment" and people who are "in the moment" most of the time are the happiest people. Every time I take the time to do a little painting or sketching, I end up a little more energized, and certainly in a better mood.
Goodprognosis, I agree - no need to change your tag lines at all!! I actually find it easier to understand where you have been and where you are when you include those details.
Cin, I miss your comments and hope you feel well enough one of these days to post something on your own. But I am SO grateful that Elaine is sharing both her own experience and your experience with us. It is so nice to see how the two of you work together, partially because I am hoping to begin working with one of my sisters in a similar way. She is a nurse and the two of us have always shared similar values when it comes to patient-centered care, we have talked a lot about end-of-life philosophy.
Hugs to all tonight!0 -
dear group. First, let me say to Linda - I am so sorry to hear about your results.
I lurk on this thread, primarily because of Cindy - we have chatted a bit, and I have chatted with Elaine offline. My primary rationale for participating on this thread is not my diagnosis, but rather because I lost my Mom to stage IV lung cancer about a year ago. She decided from the very beginning that she did not want treatment, she even chose not to have a biopsy (because she had a do-not-rescitate order and most physicians won't do lung biopsies with this order, because of the risks). It was obvious that she had stage IV disease, as all imaging modalities showed lesions in her lymph nodes, adrenals, and liver. Anyway ... it was hard for me, as a daughter, to hear her desires with respect to treatment (I wanted her to try treatments, see what might be available, etc.). But, from the start I realized that we really don't have control over many things in our lives (certainly not as many choices as people seem to think, we have to raise our children, we have to participate in society, etc.) - at the very least, we *should* have control over how we die, if possible. My Mom had pallitive radiotherapy (which mainly made her more comfortable by reducing the size of one of the tumors that were pushing on her heart) - and hospice care after that. She died peacefully, in no pain, and did not suffer. I credit her comfort at the end to her wonderful hospice nurses. The hospice social worker helped us find the best living arrangement for her (we moved her into a retirement community - not quite assisted living as she did not need that level of care), and helped with family "troubles" that occured. My hope for Cindy, and all of us actually, is that we can experience the same sort of peace and dignity at the end of our lives as my Mom did.
Best wishes to you all.
0 -
{{{{Linda}}}} Sorry about the biopsy results :-(. Sending you lots of warm thoughts and hugs, as well as strength for the way ahead, whichever road you choose.
BL, thank you for your post. My mom has a DNR, she doesn't want feeding tubes and if she ever had a stage IV diagnosis, she already told me she won't fight. This is from almost 50 years as a nurse, I believe. After talking about this for years, I am starting to think she is wiser than me and I should be listening closer .....0 -
Just passing through quickly to catch any updates from Cin and Elaine, hope they come back soon. Love and hugs to all of you.
0 -
Oh to all my lovely friends...I sincerely hope that I find you all doing well this morning.
Elaine has been a gem at keeping all of you updated on all of the things that are going on with me, there will never be enough words to thank her for doing that. She's been here cleaning and cooking and following me around like a little lost puppy just waiting for me to need something. And there has been a lot to do. Rick's health hasn't been doing very well so she came at the perfect time to help out. The time's going by way too quickly as I see the days go by faster and faster.
My Dr said that there are more tumors now and they keep asking me to have more scans but I've had the test that confirms that I am stage four and I don't want anymore tests. I really don't give a shit what they want to look at. I can feel that they have started to grow into different areas, and I still only want to treat the pain. The Nurses and Aids (Hi Lisa:)) at Hospice have been really great about taking care of me, The Dr.s are great too and have me on a PCA where I have a contunious drip of Dilaudid 24 mg an hour and I can give myself an extra 20mg twice an hour. I've never even heard of doses that high but they are telling me that if it's not knocking me out, and it's working well for the pain then there's never too high of a dose as far as their concerned.
Over the years I have always jumped at the chance to help people whenever I could, and I've raised thousands of dollars for many people, so I don't know why it comes so hard for me to ask for help when I need it. I'm not able to do simple things like taking a bath by myself and after emptying the dishwasher I was down in my bed for the rest of the day. I keep trying, but I feel like there's a road-block in front of everything that I wanna do. I have come down to not having a car at all now because it needs almost a thousand dollars worth of repairs before I can get the new registration tags on it for it to be legal. I had to call the insurance company today to tell them to report it as not being driven so that I don't get a fine for it not being insured. If this was for someone else, I wouldn't have a problem spear heading the fund raising, but since it is me I do have a bit a shame over it. I don't even know how to set up an account where anyone could donate whatever they wanted to. If I had any reason to think that our financial situation would change enough for me to get caught up on all the bills I never would have brought it up. if I have offended anyone I apologize.
I know I'm dyeing, but I also know that I need to keep on living as long as well as I can. I came up with ways to be creative about paying for everything else but now I'm stuck. I need help.
If anyone has ever started anything like this I would love to hear about it. This is the most I've written in days and I'm done already for the day.I just hope that someone gets up soon so that I might get some breakfast with my coffee. I love haveing grits flavored like a sugar cookie. YUMM
All my love to everyone,
cin
0 -
dear cindy..
you are such a ray of sunshine! love your attitude...
As for asking for help...i understand how you feel...
but money... is just another tool... and if someone has it and you need it... why not?
As for how... there r many ways...dont worry about the how...it will come
im sorry to hear about your hubby... what a bitch this is happening all at the same time... ill send him some bubbles...:)
as for sister... i can relate. Mine has been so good to me thru all this... her love and care is so precious to me. She is my older sister and on her birthday i always say...
"this is the day my mom gave me the best gift of my life.... two years before i was born! "
lol
forget the dishes cindy...buy some paper plates
still going out in the sun? if you cant... maybe a sun lamp would be nice?
take care of yourself cindy... remember we love you... and you are not alone
0 -
Cindy, sweetie, I think everyone knows how you feel about asking for help. Can you or Elaine set up a paypal account that we may contribute to get that car back on the road? Then we could just pm you and get the details? Let us know.
0 -
Hi Cindy, so glad to hear from you my dear friend. Money is the root of all evil but we need it to pay bills and not live in the gutter. Not sure what you can do but to be honest i don't like giving my credit card details on the net.
Have you looked into cancer support group that help out's with money problems. Over here we have group's like that and new site has just been formed.
will do some surfing
xx
0 -
Yay, Cin is back!! I was so happy to see your post, and that you are managing your pain and getting back to doing some things you enjoy. What a huge difference between thinking only about the pain, to being free to think about other things! I am sorry that Rick is not well, on top of everything, and that Elaine has to leave soon. This is a lot for you to worry about, isn't it?! How is Jessie holding up with everything?
I also think a paypal account would work, you could put a link to it on your blog. I've been involved with these types of things before and people are more likely to contribute if they know how the money will be spent, vice just sending money. So maybe you could call if "Cindy's Car Fund" or whatever bills you need paying first to keep the household going. I know people who live pretty well without their vehicle, instead of sinking lots of $$$ into getting it back on the road, insurance, and gas, what about just taking taxis as needed, or having the grocery store deliver? Most of the stores waive the delivery charge for the first time, so you could rotate stores and try them all out ;-) I think having a car gives a sense of security to most of us, but maybe it's not as necessary as paying other bills, just thinking out loud here! You know the prioritized list of your needs better than us. The other option is to just go ahead and rent a car for a month, you can get a good monthly rate and it will cost 1/3 of the cost to get the other vehicle fixed and is immediate. Most of the rental car companies will bring the car to your house. Your insurance company probably has some kind of discount with Hertz, etc. I've rented midsized cars from Dollar for $79 a week. If you set up something, maybe we could each sponsor a week directly with the rental agency, skipping the paypal stuff.
We could also get your prepaid cards for your fav grocery store, maybe that would help? Or gas? Prepaid cards might be a better way to go for all of us than giving financial data on the web, like Ali says.
Again, thinking out of the box, but hope this helps! With 25 years in the military world, I've learned lots of shortcuts and workarounds :-)
So glad you're back here with us, yay! Hope you are back to reading, as well. :-)
Love and hugs to you, friend!
0 -
Cindy, reading Ali's post reminded me of something. When I was in palliative care in 2009, they had asked me if there was anything I needed. I was particularly worried about my sons getting proper meals. Without me asking directly, they set up a service that delivered homemade meals to the house three times a week. It didn't cost us anything (and actually I didn't ask), but I'm pretty sure the money came from a fund they have to just help people out that need it. I know they are always asking for donations, so I'm pretty sure that's where the funds came from. Perhaps if you mention to your palliative team that you're experiencing difficulty, they can lend you a helping hand. Not to say we don't want to help you out, but this might just be the quicker way to get what you need. Paypal could take a while to get to the total.
0 -
Also, just wanted to let you know that they can also be very helpful in getting your affairs in order. They sent a lawyer to my room (at no cost to me) just to make sure everything was taken care of. I think if you ask, you'd be surprised how much they can provide. Everyone wants to help, so hang in there. It's going to be o.k.
ETA: I'm in Canada and palliative care might work differently there, but you have to sign a DNR order to receive the many services they provide. Do you have one in place? Tough question, I know, but it might make the difference in getting help.
0 -
Cin thanks so much for checking in and let us know specifically what we can do, do you need food, money or what?
You are so strong and I know you are probably tired of being strong, if that is true then just take care of yourself....also agreed, don't worry about the dishes, go towards the sun...lay in it, sit in it, smile at it...the dishes will wait....putting a smile on your face is what the project should be....don't push yourself, do as much as you can, no matter what it is....
also there are grants out there have you applied for any of them....I just received a 300.00 from the American Cancer Society....a homemaker grant which isn't in all states......check out www.patientadvocate.org
Sandy
0 -
Cindy be sure to check out, or have the hospice check out the American Cancer Society in Phoenix. They do have finds for various needs that you may be able to access.
Paypal is so very easy. If you have a checking account it can deposit donations into your paypal account and then you tell paypal to move it to your checking account. Easy and secure, I have used it for years. It is also easy to put their link on your blog, one would just click on it and there they would go right to paypal. It is the simplist form of payment I have ever used.
I send you hugs and just ebnough sunshine my friend.
Love Ginger
0 -
Cin, it is so good to see you here!!!! You have an amazing sister! Watch your mail in the next couple of days for something from me.
Palliative care and hospice are two very different concepts in the US. Palliative care allows you to continue all treatments, but addresses symptoms and quality of life issues. You do not have to be in the end stage, you don't have to be certified that the doc thinks you have only 6 months to live. It is available for ANYONE with a life-threatening or life-altering disease, such as congestive heart failure, COPD, cancer. In fact, recent guidelines have suggested anyone with a new diagnosis of cancer should be offered a palliative care consultation from the beginning. Hospice, on the other hand, is for those with a life expectancy of less than 6 months, and they usually are not pursuing active treatment, although treatment to relieve symptoms is permitted. There is a lot of confusion about these two concepts, even amongst physicians.
My own PCP and MO refused to refer me to palliative care when I requested it due to the problems I was having; so I now have a new PCP who is also certified in palliative care, and I am in the process of finding a new MO. Which is a little tricky right now, since I have the recurrence, my current MO got the pathology report and called me (I was out), and I see the new MO tomorrow.
Hugs to everyone tonight. I am tired.
0 -
Cin, I pm'd you.
0 -
Cindy, my dad has been in hospice since March. They have so many people who visit my mom & dads house on a regular basis. One of them comes for the sole purpose of seeing if they need any help paying their bills, he offers assistance with power bills, heating oil, groceries, or anything they may need help paying. He visits every few weeks. My mom refers to him as the humble man. He works for hospice and distributes money that comes in as donations to hospice. We live in Georgia, but your hospice organization may have funds available too that could help you immediately.
0 -
*flower smiles *
the beauty and love in this thread is incredible... thank you cindy and all
0 -
The Help Paying for Living Expenses part of the Paying for Your Care section on the main Breastcancer.org site can point you to some of the many resources available.
We know how generous this community is, but since our Community Rules don't allow for posting to promote making donations, please keep the details of anything like that off BCO. Sending friends to a personal blog would be a better approach.
• The Mods
0 -
Just stopping by to say hello to all this morning. Cin, I hope you get a chance to do a little digging in the dirt with Elaine before she has to leave. I know the time has probably flown by - Elaine, when do you have to leave?
I have been offered an opportunity to "start new" for a "possible cure" with this latest recurrence. I have to get PET/CT first, then decide what to do. New MO is really great, explained the biology of breast cancer to me in a way that I had not considered before. If I choose to get aggressive, I know I am not the strong woman I was when I started this journey 2.5 years ago, and the therapy can likely kill me. My new MO said the most important thing right now is to get my neuropathy under control so that I feel better, and if I feel better, I may be able/willing to do more treatment. I asked her if I would ever feel better than I do right now, and she did not answer that question. but did emphasize that improving the pain would be the first step toward that. I am going to try a new drug - when I said I didn't want to, she told me I was acting like a 5-year-old who said he didn't like turkey, but had never tried it. So we laughed, I agreed to try to not be a 5-year-old, and will give this one more drug a try and see where we are.
I finished reading "Can't Wait to Get To Heaven" and found it a bit sappy, a bit optimistic, but it made me think a lot about how I want to be remembered. I'm pretty sure I don't believe in "heaven" as it was portrayed in this book, but I am pretty sure I would like to be remembered as a vivacious, funny, outrageous, slightly eccentric aunt than an angry, bitter old woman. I have a long way to go. The choices I make regarding my treatment need to honor this goal. Not sure where I go from here, but for today, I will meet with my study group, and I will paint and I will use breathing and mindfulness to get me through the pain and fatigue and sadness and anxiety.
Much love to all of you, may you find moments of joy, peace, and love today.
0 -
Hi everyone and a huge welcome back to a sorely missed Cindy!!!
I haven't been here for a few days so firstly thank you all for your kindness in your replies to my post about my long diagnosis tags. I was overwhelmed by all your thoughtfullness and support. I'll leave it as it is and consider it behind me now as I've finished my radiation and look forward to a better 2013 and I wish all my brave friends here the best and healthiest 2013 possible.
Cindy, all my loving thoughts go out to you and I pray that your pain will remain somewhat under control as you head into a new year.
Linda I will pray that your breathing and mindfulness will always help control your pain levels.
love to all, lorna
0 -
Linda, I hope you get to try the new treatment, you can always stop if you don't like.
Cindy, have you looked into getting any help?
I hope your not upset with what the mods said! All your friends here don't feel like that so chin up.
What's the weather like ? Here, we are getting weather from Russia.
Xx0 -
Wow, Linda, your onc is arrogance itself. A child knows nothing about turkey, but you know plenty about a treatment even if you haven't tried it. I'd tell her to stuff her mothering and let you be.....can't stand it when cancer patients are lectured to like that. How blind, judgemental and lacking in empathy. I am glad you took it well - better than I would have.
Don't be guilt-tripped into anything. Make this a decision from your heart.
There is no virtue in treating the cancer, and no virtue in not treating it.
Do what YOU want. No one has the right to advise you on the finalk decision.
Goodprognosis: glad you left your signature as is! Godspeed.
0 -
I was worried about the same thing, Ali! I checked Cin's profile and I don't think she's been on the site her post on the 8th. I hope she comes back soon, it was nice having her out here with us again! I think that Elaine leaves tomorrow, so guessing this is a tough time. Sending them, and all of you, hugs and warm thoughts today!
0 -
Hope the same thing.
0 -
You can also reach them through Cindy's blog.
0 -
Athena, I can see where you would think the MO was arrogant, but actually, it was quite the opposite. I am the kind of person that occasionally needs to be hit up the side of the head with a 2x4 to get my attention, and she did it in a very good way for ME, with humor. She really was not patronizing in her tone of voice or nonverbal approach. She was right - I have been resisting, digging my heels in, refusing to even try this class of drugs for nearly 2 years because I am terrified of them. But she was encouraging me to "just give it a try, if it doesn't work, then we will know, but if it DOES work and the SEs are tolerable, quality of life will be MUCH better. And you can always quit if you want or need to." So I am going to try it, with as open a mind as possible (and let me tell you, that is a real challenge for me!). IF we can get the neuropathy symptoms improved, I may be willing to go for more treatment, but if not, I don't see the point of prolonging things.
One thing I have a really hard time with is knowing that there are lots of drugs available, all with SEs, some tolerable/some not, but when I look at the studies it seems they only provide maybe 6 months of disease-free survival and only a year of overall survival (median, meaning half the women had less time, half had more time). I just have a hard time considering doing something that will make me feel bad for just a very few months more of life. I don't really have much on my "bucket list" so the difference between 6 months or 9 months is very small by my way of thinking, when compared to my lifetime. But then I can't seem to get a straight answer from the docs who are prescribing these meds as to what their "worst case scenario" and their "best case scenario" are. What the MO reminded me is that to choose one of these treatment regimens MAY be just that amount of time needed for a new therapy to come out that truly WOULD be helpful.... it's such a gamble.... Still skeptical here, still not afraid of dying, but sure have fear of the unknown and the probablility of much more pain and disability.... Sorry about the ramble, this just seems to be one place I can do that without worrying about trying to make my loved ones feel good.
I have been thinking about starting a blog, much like Cin has, for me to communicate with a large family. Does anyone have any suggestions for resources on how to go about doing this?
0 -
Dearest Cindy....ditto what Ali said. Your friends know where to find you and want to help.
0 -
Linda - what matters is how YOU took it, so I am glad it registered in a positive way. You face some tough choices. I hope the best for you.
Gracie, Gingerbrew - thanks for the reminder - putting paw to head. Off to see her blog..
0 -
So glad to have found this site. Very few are able to think about "what's next"? I"m stage 4 for over 2 years now and the treatment and/or se are becoming so bad that I'm starting to wonder if it's really worth it. So far have been on CMF, Taxol/Avastin, Xeloda, Navelbine and Aromosin. There's probably more I don't remember.
At this point, my biggest concern is to remain pain-free and my meds seem to be working well. My onc. said I'm
not ready for hospice yet. I agree that I'm not yet at that point but it's important for me to think about what I may soon be facing, Today, I can say I don't have any fear of dying but that feeling changes all the time.
My DD will be movimg back in with me for the next 3 momths to carefor me and it ithis sure is a relief.0 -
Linda, Check out caringbridge.org. It's like a blog and you can post pictures. My niece used it for her husband. It was a great way to let friends and family know what was happening without having to explain it over and over. People can leave you messages of encouragement as well.
0
