No treatments for me.
Comments
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Cindy:
You answered it perfectly, and not at all long-winded! Thank you so much for sharing. It sounds as though you are really making things better for yourself, so congrats.
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Cin,
I know I'm late in chiming in, but I too want to thank you for sharing.
'Admiration' isn't really a good enough word for how I feel about your decision, but I suppose it will have to do otherwise I might write a book and bore you to tears with praise.
(((hugs)))
Traci
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Cin, thank you so much for your comments and insights. I find myself considering further treatment based on fear again. I saw another BS for a second opinion today, and he was even more blunt and painted an even uglier picture of what local/regional recurrence would be like. NOT good quality of life.
So, as Andy says in "Shawshank Redemption", I need to "get busy living or get busy dying." I realized that there is no pussy-footing around with this. If I choose NO therapy now, I will have limited choices and options in the future. If I choose therapy now, it could hurt me more or it could "cure me." The way the doc talked today gave me an ever so slight glimmer of hope that I might still have a chance to beat this thing for a few more years. If I do nothing, it is 95%+ that I will die of this, and not pleasantly if it is local/regional with tumor swelling my armpit, encroaching on axillary nerves (my biggest fear of radiation is damage to those nerves and to the lungs), and not a quick death. He also said no one would come to visit me because I would smell bad. Well, my sense of smell is pretty acute, DH says I am like a dog, so bad odor would not make me happy, either!
There is a possibility this won't happen, but the way my cancer has been acting, with early local recurrence at one year and again at 2 years, I am pretty sure it is not going to go away on its own. I have requested a conference with my BS, MO, and RO to meet together at the same time so that I can put all the recommendations together. I am so tired of spending 3-4 hours for a vist with each of them on different days, and trying to come to some understanding of the big picture, putting a plan into place. The NP seemed to think she could arrange this meeting - it would be after a wide excision so path report would be back. I am going ahead with the surgery - it seems pretty minor compared to everything else, but not following up would make the surgery seem a bit futile. But if margins are clear, might still buy a little time....
I hate making decisions like this. It's like a mulitple-choice test and none of the answers are right. *sigh*
Thanks for letting me vent - I really am trying to be a rational person and not some emotional wackadoodle making poor personal choices. I am just tired and depressed, in pain, and did I mention how tired I am? I know these can affect decisions, so I am trying to rest more, get better control of the pain issues (my PCP is great with that!), and find moments of grace each day.
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Athena,
I am still trying to keep myself as well as I can for as long as possible, It does seem to be helping me a lot.
Traci,
Thank you, I'm just trying to do my best to be honest about how things are happening with me so that others don't think that theior alone with this kind of decision.
Linda,
I think that you do need to get all of your Drs together to give you a real answer to all of your questions, that was a great idea on your part! Like i've said before we need all the info before we can make such a big decision, I hope that they are able to give you a true picture of the odds of going with whatever they are suggesting as well as what would likely happen if you refuse. I do encourage you to take someone with you to this meeting for support and write down everything they say to you so that you can go over it a few times after you get home. Sometimes we don't always remember all of the things that are said during a Dr appt. I'm looking forward to hearing what they say about everything, so please keep us updated.
All my love to you my friends,
cin
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Here I go opening my big mouth again...but I had a feeling that I needed to share something here. I just wanted to tell you about how my hospice team and I have decided things would go when I'm ready/have had enough. We have all decided that when I am not able to live with the pain, or the emotional stress gets to be too much, I will be put into a drug induced coma. At which time there will be no food or water given to me, nor any other thing that would do anything but control pain and keep me in a coma. It was explained to me that when you do go into a coma without any assistance for nutrition or fluids that people usually will only live between a day or two and a week or a ten days. These are usual time spans from what I'm told. This is probably a little too much info for some people, however I thought that someone here needed to know that this could be arranged if they wanted things to happen this way for them. It's so important to make sure that your care providers know what you want, and that you know what they are and are not willing to do. Some states are different as to what is able to be done for a person at the end of life. I know that here we are able to say when we want to be put into a coma, but you do have to be nearing the end of your life to have this done. It is not the same as Dr assisted suicide, which is not legal. You do not have to waste away in a bed if you do not want to!
All my love to everyone today,
cin
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Cindy that's not too much information at all. I have always wondered what the end might be like for someone who's in a lot of pain. So I guess you say your goodbyes and they give you the drugs. It sounds like the best possible way to do it. I'll bet it's a weight off your mind to have that plan in place.
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Ann,
My biggest fear was that I would suffer in the last few weeks or days, and just having that conversation with my hospice team was what took that fear away. I would think that there is more that happens after the coma drugs are given but I'll be unaware of what's happening so I don't worry about the pain anymore. I was impressed that I wasn't the only one who had these same fears and that the hospice people are fine with taking away all of the suffering that they can...when asked to do so of course. This is how I can focus now on living as well as I can, instead of focusing on suffering in the end of all of this crap. When I was making my decision not to pursue any more treatment I had no idea that hospice was able to do this at all, so it was a huge load off my mind for me to learn about palliative sedation/coma. I also had no idea that people could make plans with hospice before hospice was needed. This also helped me, technically, I'm not on hospice right now, I've been seeing my pain Dr and PCP again and I will only go back into hospice care when it's needed. This is also not unusual from what I've been told. People are able to go on and off hospice care as needed.I had thought that once I started on hospice that I had to stay on hospice but when I was starting to feel better and didn't need the in-home or inpatient care I was able to get off the hospice service and go back to my regular Drs, and hospice set that up for me. They really to cater to all of the needs of each patient, because everyone's needs are different. I can't say enough good things about the wonderful way in which they see to it that each person is involved in their care and they respect whatever we decide that we want. They don't push things on me...and I love that!
cin
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Cindy Rose, I love long-winded. Am a writer for a living so long-winded it is, just give me a keyboard. Talk away.
A suggestion is homeopathic remedies for pain too. Very effective, a choice I would use.
I was a repo-driver when in college. With my boyfriend and his buddy who literally rode shotgun, scares me to think about the daring thrill it wsa now) we would go in the middle of the night and get them off the streets in chicago and I drove the get-away car. These were repos done after the nice person like you had attempted to get the keys. Either no one cooperated or they just couldn't meet with the people face-to-face, so we went, broke in car, pulled ignition (somehow, didn't actually do that part) and took the car.
I am eating what I want all too often too, Hubby is quite unhappy about it, he thinks no sugar. Know I should not, but darn, if I literally had a year or two, and gave up Rice Krispy treats to get just one more month? Really? Lately I am thinking there is a change, I was very very ill after the biopsy in July though was not real thrilled w way I felt before either. But I found out about the red and black Meeker raspberry seed powder and started taking a lot of that and everything changed. I feel good, working again when I was sort of giving up after those FIVE+ lymph node PUNCH biopsies sent the cancer cells all through me. (I was basically sedated, sleeping, and had agreed to fine core needle ONLY.) But I feel good right now. Still, I will not be doing more than alternative and my brother is very unhappy about that, he will be trying to talk me into the chemo again tomorow morning. But this is my way because I do believe it is a wild card in the tx field and i believe I could never tolerate the other. My family just has to accept it. Brother is the one who is a hold out, sis and DD are good, Hubby good. Hope you family comes around more, it is hard when they don't understand, for you and them.
Will talk to you guys more later.
LOVEEssa
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Essa,
I did get to do many middle of the night repos too(we couldn't carry weapons in the trucks here)but we had trucks that we could push buttons inside the truck and lift and drive the cars away without ever getting out until we were down the road and had to get out and strap it down and light it up. I always preferred to try for the keys first because I hated spending too much time going back after stealing the vehicle to recover the keys (or pay $40 to have new made) and we didn't like to pay other people to do things, we did everything ourselves. We still right now have a wedge and a long reach in the trunk of my car because we still get calls for lock-outs for our daughter and her friends.
I love sugar, and I'm not giving it up for anyone or anything. I've never craved it before but now I wake up wanting it like it's a drug. I love M&Ms and go through them very fast. I've gotten to where we buy the big bag at Sam's Club every few weeks and a few large bags from the grocery store in-between. My husband wants me to eat more than I do, he likes women to look like they aren't hungry, but he also does whatever he can to make me happy no matter what I want. I think everyone should have what they want all the time, but then again I'm totally spoiled...and loving every minute of it. I hope your brother gives up on what he thinks is best for you and respect what you want to do with YOUR body. It's so hard for our families but they all need to get a grip.
All my love,
cin
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I can relate so much to what you are writing and it is so very brave and helpful to listen to your journey. I too have seen hospice do wonderful things for folks in my family and others.
Back in 2007 after 8 months on Arimidex and Aromasin I threw in the towel and flat refused to take another AI. They made my bones ache unrelentingly, I couldn't sleep and I was so depressed I was Suicidal. I got off those miserable little pills and felt so much better. I told my PCP I would just as soon die then take those things again. The oncologists I saw during that time would not scan or do any labs I guess because of my attitiude. They would not offer any other meds instead of the horrid Ai's. So I have done without for 5 years. Then I started getting GI issues and sore ribs, off and on back issues. The GI issues were from high calcium from widespread bone mets - broken ribs, spinal mets etc.. I was diagnosed during a virtual colonoscopy in April. The GI doctor ordered at PET Scan and the mets were found.
I went to an oncologist that this GI doctor recomended and he offered faslodex and zometa. Those 2 drugs had never been offered before. My husband cried in the office visit because he knew that if those dreadful little pills were offered again I would refuse. Between his reaction to the bone mets and my 3 girls tears I agreed to trial the faslodex and zometa. There has to be some quality of life and I felt I had none on aromatase inhibitors. I couldn't be a happy Mom to our 3 kids or there for anyone else - myself included. I even wrote in my advance directive to send me off to hospice. I will continue on these drugs since they are working with very doable side effects. I am willing to trial something for myself and my family - to a point. For now these drugs are working and I can live my life and be there for my family.
But I whole heartedly agree with you, that it's the cancer patient that needs to take a stand and tell everyone where to draw the line. I feel that even a loving spouse, kids and parents/family - doctor - have no right to guilt ride a patient into more treatment then they want. It takes a brave soul to stop accept life as it is and enjoy what remains with dignity and love. I hope I will be as strong as you when that time comes. Pax
Cindi
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Hearing your story makes me wonder if it's brave to refuse or brave to keep being treated? I think that the answer is both! I believe that everyone has a different body so there is no way of knowing how anything is going to turn out, no matter how hard we try either way we go is very difficult. I will never say that I think that I know what anyone else should do with their body...except to say that I think everyone deserves the chance to decide just how much they are willing to go through in search of a cure. Is there even such a thing after you have mets? I've met some wonderful women from BCO that have been going through treatments for years and have terrible problems to try to deal with every day just so that they can spend time with their families. That's the only reason that I've heard of but I'm sure there are others. I think that after forty one years I've raised my kids the best that I knew how and I've taught them everything I know so it comes down to my husband. I don't know how much I've said about him here but he has already had two major heart attacks and the first stints didn't last a year. He doesn't expect to be around for many more years because of his heart so really we've both had to come to terms with being very ill at the same time. I did find out that I'm going to have my first grand baby in April and I do want to stick around for as long as I can to make sure that he or she knows me but even knowing that the baby's coming I could never poison myself with chemo again. I believe with every bit of my heart that I'm doing the right thing for me. So is that brave or is it selfish? That part maybe I'm not so sure of, but I still know I'm right for refusing.
cin
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Hi Cindy
I've been reading your blog and your posts here on this site and wanted to tell you how moved I am by the way you write and think. You look life - and death - in the the face and I admire you for it. You mentioned in one of your posts that you wonder about God, is there a heaven, etc. Well I would be prepared to stake my life on it that if there is a Heaven you will end up there. And someday I hope to meet you face to face as I think we might have a laugh or two. You have touched so many of us with your generous, sometimes funny and insightful postings here and on your blog and I want to thank you for that. (you should note that I never reply on blogs or post anything, ever, on internet sites - but your posts moved me to make an exception!). I posted all this already on a reply (and wrote it so much better!) on your blog but somehow lost it all before I could submit it! Isn't that life! I'm sure I'm not saying it now as well as i did the first time but I wanted you to get the chance to read it.
Diagnosed in August this year, I've just had my lumpectomy plus sentinal node biopsy and diagnostic investigation on my other breast and am feeling good but still waiting for all results. I have been given a very good prognosis by my surgeon and it seems so unfair to me as you and so many others here are suffering so much more than me and my heart goes out to you. I will keep you in my prayers and ask you to remember me in yours.
Thanks again for your uplifting posts Cindy.
Lorna
I forgot to mention Cindy that my husband also has a heart problem and found himself in the hospital again for collapsed stents, 5 days after my diagnosis so I know how worrying it is for both partners to be ill at the same time. We're both just days out of the hospital. Another case of truth stranger than fiction.!
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Cin, finally got around to reading your blog - awesome!!!!
You mentioned low energy - are you on anything for that? My PCP/palliative doc put me on Ritalin (took several times of her suggesting it before I was willing to try it as I seem to have such adverse effects to everything, and I do have a couple of contraindications to this drug, one of which is sudden death from cardiac arrhythmia, which I consider not a bad way to go!) and it has been extremely helpful. I still need about 10-12 hours of sleep at night, and a couple more hours of rest during the day, but the hours that I am actually up and around, I have enough energy to actually do some of my fun things, rather than sitting and looking at them and wanting to do them but not able to get the body in motion. It has been one of the best, most helpful medications, makes me feel better rather than worse. That and and Ambien and a little pain control - getting me through the days much better now than 4 months ago!
Much love,
Linda0 -
Lorna,
I have always wanted to go to see Ireland and so has my husband, so if we ever do get to go I'll be sure to let you know. I very much appreciate that you have been reading what I had to say, God knows I always have much on my mind...some good, some bad. I don't think that your suffering has been any less than the rest of us, no matter what our prognosis has been, because we all have a lot to decide and think about and then try to deal with everything the best way that we know how. The way I see it we're all in this together and hopefully we can all continue to be there for each other. I would love to take all the credit for all of my ideas but to be honest I've come to be the way I am now through knowing so many other wonderful people who have helped me so much with their ideas and advice. I will definitely keep both you and your DH in my prayers in the sincere hopes that you continue to do well...both of you.
Linda,
I drink my coffee first thing in the morning and I have found that by not taking a nap in the middle of the day I'm able to sleep better,(with a sleep aid) and sleep longer. I get very bad reactions to most medications so I try to stay away from anything but pain meds and what I have to take for high blood pressure. For some reason I've felt pretty good for the last two days, I don't understand why anything would be different now but I'm not complaining at all. I've been taking advantage of the energy that I've had and I've been able to do some things that I had been putting off for a while. I've put in a call to my surgeon to ask if I would be doing more harm than good if I were to let her try to remove this tumor, but I havn't heard back anything yet, I'll let you know what I find out.
All my love,
cin
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Going to Ireland is going to heaven.
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Hi Cindy
Great to hear from you. I've been reading more of your blog. Each day i mark where I was and read it from the bottom up so It's in date order. I hope you make it to Ireland some day and look forward to meeting up with you. It makes me smile that 'infobabe' wrote above that Going to Ireland is Going to Heaven!. I guess the other man's grass is always greener lol. I love ireland but was in Florida this year and boy you've got some heat and wide open country there in the USA, I loved it. I see you're in Arizona - a place I'd love to see some day too. Whenever it's mentioned I always think of that great movie 'Starman' where Jeff Bridges character calls it 'Arizona Maybe'.
Anyway, hope you're having a good, reasonably pain free day Cindy. It's raining here, guess it's nice and sunny where you are.
Blessings, Lorna
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Lorna,
The sun is just now coming up here in Az but yes it will be sunny today. It's actually been very nice here these past few days because summer is over but man it was hot here the past few months. I'm so happy that you are reading my blog in the order that I wrote it, it probably makes a whole lot more since that way. Even I don't even remember a lot of it because my memory doesn't work as well as it should, so I go through and reread it every once in a while. I am feeling good again today, I'm supposed to go out to breakfast with my mother but first I had to come here and see what everyone was up to today. This place (BCO) has become how I ground myself and start every day. I love to see what people are thinking and doing as well as making sure that I keep everyone updated on what I'm up to. I had better go take my shower and get dressed before breakfast time is over...I don't wanna miss out on the french toast and bacon.
All my love
cin
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I love reading that you're feeling good today. Enjoy breakfast with your mom! French toast and bacon...mmmmmm.
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Cin, I am so glad to hear you are feeling a bit better these days. Maybe it's the weather - I am on a better track than I was a couple of weeks ago myself - but it's rainy here, and cooler - I finally have tomatoes!!! (none all summer, now they are great!).
I am re-reading a chapter in "The Jesuit Guide to (Almost) Everything" by James Marten, SJ on discernment. It is truly a challenge to find the "right" path or make the "right" decisions sometimes, and so I have been reading and reflecting, and I think this has given me an incredible amount of power to face my near future as well as the future that is farther off. I am finding more peace within myself, and I think that is another reason I am feeling better these days.
I look forward to reading this particular discussion thread - am grateful for every one of you who post here.
May each of you have peace today, and much love,
Linda0 -
Gracie,
Thank you so much...I had a great breakfast with DH and Mom but I changed my mind and had chicken fried stake and eggs, still very good and I had left-overs for my lunch already. Like you I'm also very grateful to everyone who posts and shares in this thread. It's nice to have people to talk to who understand some of the things that we all have to deal with to some extreme. It helps me so much every day to come here and visit with everyone. So thank you and everyone else who comes here and talks about some very touchy subjects.
Linda,
If nothing else you are sounding a lot more at ease about investigating your options now and actually being able to take some of it in. That's wonderful. I can usually tell by the vibes of your posts how your doing mentally and emotionally and I can't stress enough how important it is for each one of us to go looking for our own answers to life's questions. It doesn't always have everything to do with treatment options, I believe that we must all be at peace with all aspects of our lives and feel good about all of our choices about how we continue on.There's so much to think about and when we can put not just our bc into perspective but our lives as a whole then things can come together a little easier. It is definitely much easier said than done and I really wish that our doctors would give us all the info on whatever way we choose to go instead of just scaring people to death(no pun intended) to get people literally terrified into doing any and all treatments they want us to try. There's good and bad no matter what we choose but in the end we are the ones who have to live or die doing what we believe is the right thing for us to do. I hope that you are able to continue to read and learn without all the fear and scare tactics that have been being used on you, they really shouldn't be able to put so much fear into our heads about what they think might happen if we don't take their medical opinion. I had a great breakfast with Rick and Mom then visited with a neighbor who has become a great friend to me this past year. I hope you also continue to have good days and keep a clear head about you when learning new things. Isn't it so much easier to soak in new info and make choices when you're not in a state of panic? I think it is, so make sure they give you all the answers you want and if they start with the scare tactics again just stop who ever's doing that and tell them what you think of their trying to scare you into making the decision that they want you to make. This is your body and your disease and your life so please don't let anyone take that from you. I wish only great things for you and above all else peace in your heart and soul to make informed decisions that will give you the best kind of life that you can get. I think you could teach those doctors a few things about how to deal with people in a more respectful way.
Have a great day my friend,
cin
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cindy - your thread has been of such great help and comfort to me. I have bipolar I disorder. The effects of adjuvant hormone therapy and the mania almost cost me my life and I had to stop the cancer therapy. Now I am developing perimenopausal symptoms that have begun to seriously threaten my life again because they are combining with the mood disorder. I have an appointment to see an obgyn about hormone therapy. I am aware of the risks to by er-pos cancer - but my risk of dying otherwise is greater. Also, the risks of estrogen on BC may be misunderstood and overrated.
We all deserve to choose our manner of death. We also deserve to celebrate QOL above all. You inspire me and I feel honored to keep your company.
After all, who isn't safe with a repo "man" :-)
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Athena,
I'm more than happy to help you with anything I can. I think that when people give themselves the ability to recognize what their fears are about dieing then they are able to live so much easier with any decisions that have to be made concerning treatment. My 22 yr old son is bi-polar and I've seen first hand what it can do to someone so anything you can do to get the treatment that you need along with not making your bi-polar disease worse sounds to me like a good way to go. I'm always amazed at all the people who still believe that a few chemo treatments will work for everyone and after we get through all the "little" SEs we'll be cured? For a few that statement might actually be true, however we each deserve the opportunity to decide weather or not we can and want to give it a shot(without being judged for what we want) . You have good reason for what you're doing and I'm in your corner if you need support. Good for you Athena!
All my love to you,
cin
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Athena, I think mental health is often more important than physical health. Tamoxifen put me into such a depression and emotional roller coaster that I coudn't function, and when they added more drugs to try to treat the SEs from tamoxifen I got much much worse. I agree that there is conflicting evidence on using hormone replacement in ERpos BC. Some docs will consider bioidentical hormones. And you are right about the focus on treating the cancer may lead to dying from that treatment, and not the ones most commonly talked about, like infections, new leukemia or lymphomas, heart failure, etc.
Best wishes, hoping you have an understanding and compassionate gyne.0 -
Thank you both! I do hope my medical team is understanding.
I forget who said this, but "the good physician treats the cancer. The great physician treats the patient."
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Athena,
Just remember that you are in charge of you and don't let anyone get away with pushing you to do anything that you don't want or that you don't believe will work for you. I think that once our Drs know were not going to be pushed around they simply quit pushing and start having actual conversations. You are the boss and you know best when it comes to what you need. I hope they can quickly figure out what works for you in every aspect.
All my love,
cin
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Thank you, Cin - I couldn't agree more. We must always remember that it is OUR body and not anyone else's, and that the doctors advise and care for but do not rule.
I look forward to the day when the message on breast cancer isn't quite so homogenous (fight, fight, fight, you will win!!!)
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Athena,
I totally agree...I saw the best movie last night on HBO, it was 50/50. I missed the first hour of it but I did get to see the rest and it hit on all the right things as far as I'm concerned. And although it was a movie about a young man with cancer who thought he was going to die it had a wonderful ending. I won't ruin it for anyone, but I definately recommend watching it. Now I just have to figure out when it will be on again so I can see the whole think.
All my love,
cin
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Cindy,
I've been following your journey with love and admiration. I just haven't posted before now.
I wanted to say that I've seen the movie "50/50" twice this week and cried buckets each time. It was so therapeutic. And it had a great ending. My best friend is Stage IV and she is in the hospital right now trying to get her pain under control. She may have a compression fracture in her spine.
All the best to you ... and sending a big hug,
Bren
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Bren,
I was so impressed with that movie, but I still havn't gotten to see the whole thing. I have been watching for it though. I'm sorry to hear about your friend, I hope that she is able to get her pain under control...that's always been difficult for me to do. I'm doing great now though because I found a medical team that understands what I want and so they make sure that I have whatever I need for pain. I ended up in hospice twice and in the hospital many more times before I was able to find what worked for me. At one point I was being given too much of a very strong pain med and I really thought that I was going to die, but after I weaned myself off of it and made my Drs find things that I could take that didn't make me out of it all the time I started to do better. I hope that your friend has a medical team that actually listens to her when she talks.
All my love,
cin
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Hi Cin ... that was a great movie. I'm surprised that more people haven't seen it or mentioned it. It was so real and heartwrenching. I was glad there was a good ending.
Thank you for thinking of my friend Brenda. She posts on the Stage IV chemo thread. She was admitted to the hospital in Winston/Salem yesterday because her pain is out of control. I was able to drive down to North Carolina today and spend some time with her. It was a mess and very frustrating and confusing until we got a patient advocate to help us out. The doctors finally arrived and spent a good deal of time talking with her and coming up with a treatment plan for the pain. They're going to keep her a few more days to make sure they get the pain under control. She can't be on IV Dilaudid at home! They are going to try Neurontin and upping the 12-hour Oxycontin to see if that helps.
I hope her team gets this under control. If they can't get it together, she does have an appointment for a second opinion at another cancer center.
hugs,
Bren
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