A place to talk death and dying issues
Comments
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Happy Birthday to my June friends, Lena and thats-life-! I was June 12. Maybe my gloomy moodiness is 'cause I'm a Gemini!? Today I was pretty upbeat and positive... it's a rollercoaster. Also, my oncologist told me I should really be enjoying and taking advantage of this time (NED)... so every day I feel this intense pressure to LIVE!!!! Yikes. I can barely get out of bed some days. Living takes lots of energy!
I truly am grateful to be alive though, as I was diagnosed at Stage IV and in bad shape. Thanks Ma111, for starting this excellent thread. I've never been one to shy away from the truth. When it's time to hang it up, I'll hang it up. But I'll think about that tomorrow... 0 -
I was a month short of 61 when diagnosed. Just bone mets but they were extensive and I was in pretty bad shape. I was scheduled for 6 cycles of TC but it worked so well and really wasn't that hard on me so I begged my onc for more and I ended up having 8 cycles. If I could do "hard" chemo at 61, you all can do it. It really did a job on my bone mets. Of my original 20+, 3 keep coming back but we've been able to knock them down, so far. I was tempted to say no chemo, but sooo glad I didn't. What's up with all the birthdays? Happy happy to all of you! Mine's not til August. 64 years old. Woo Hoo and only one more year til Medicare!
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yes, we must "LIVE!!!"..start "LIVING!!"..im trying LOL..
64 alpal!, well done, and thanks for the positive chemo story, im just a big chicken, i should start a bwark bwark thread maybe..
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deleted my post, in respect to konakat.0
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thats's-life- my chemo wasnt as bad as i thought and the anti-nausea meds worked wonders. It really is a personal decision as each of us are affected diffrently, and like alpal pointed out she was 61 and did "hard chemo" so it is doable!
I personally think of Elizabeth Edwards and wonder what made her say enough was enough and let nature take its course. She had young children like myself and so i would think that would never happen, but i know one day it will.
BTW my doc phoned in some meds for my depression and anxiety- i called him yesterday, going to get the kids ready to go pick them up
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Timothea - you have such a fierce and courageous outlook on life, I can feel your pain for your children. Mine are 10, 7, and 4. I am glad you are able to take something to help with the ups and downs that come with this disease. I think when our time has come (many many years from now!), something inside us reaches an understanding, an intuitiveness, that allows us to move on. At least I hope that is the case.
I am currently reading the book "The Art of Dying," which researches deathbed visions, and the need for caretakers and family members to respect the powerful reality of these events. It gives me comfort, but also I think shows that when it is time, that peace can come.0 -
Alpal
Being 61 and er+ and Pr+, means, even though you had a hrash chemo, it was not the same dose that they give to premenopasual women how are er-, pr -. you cancer is not as agressive so high dose is not necessary.
my dose of Taxotere was 276my and Carboplsting was 800mg. Us young ones get such a high dose we cannot walk, do grocery shopping, need to take care of kids or live a lone, have to go to work to pay the mortage.
I realize that you were trying to encourage people to do chemo, but pleases consider where they are coming from and their point of view. Your post can be seen as bulling. nThis is a place for people to tralk openly about death and dying. Young people that are premenopausal have more agressive cancers that require higher dose to get a little result. Did you have problems walking, were you able to get up and get yourself a drink of water or hug your child, could you get the grociers out of the car, A lot of us are too young to be comfotable using a cane because of neuopathy and if we use a walking stick, it really bothers our childern. My daughter did not want me to go through harsh treatment again because she cannot stand to see me that sick again. 16 years old is too young to have to take care of their mother. Please understand what we go through before commenting.
To all the birth day sisters. It's a lot of you this month. I didn't celebrate my last one. I am still in the age rrange that breast caner is the number one cause of death for women. If we make it to 55 it changes to lung cancer. realisticly, I probably will not.
In regards to the trail I am in, the crappy 2nd part I had to do after the vaccine is the taxotere I started yesterday. I still have neuropathy from the first round and they told me that even at low to regular dose I am extra prone to neuropathy. I almosr fell flat on my face today in a crowd of people. If the neuropathy continues, I stop Taxotere, which kicks me off the trail. The other choice that my private onc said about is the Tykerb/Xoleda mix. The independant study I read is that it would only buy me 4.1 weeks of decrease quality life?????????????? Why are treatments like that recomended?? Are they insame? Do they really think we do no research.
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ma- i am not sure what my dose was but i def can ask my oncoologist, i think alpal was just sharing her experince. I didnt read it as bulling, but thats me
I am young, not sure if my cancer was aggressive but the largest was 11cm, i was able to do those things. i actually drove 3 hrs home after my next day shot. granted i would usually pull over at the 1/2 way point and take a cat nap because i was tired, but each of us have our own endurance levels. Young or old it doesnt matter- its a highly personalized reaction. 2 identical patients could have 2 opposite reactions to chemo.
And yes nuropathy is a bitch! i just started feeling my toes 6 months out!
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Ma111 - I'm not familiar with the term bulling and am thinking maybe you meant bullying. Whichever, I can assure you that my intent was only to encourage. You may think that because I'm "old" that I am not well versed in cancer treatments, especially for younger patients. You would be incorrect - my oldest child, Elizabeth, died in 2006 of breast cancer. She was diagnosed at age 31 and lived 4 years.
Thank you, TexasRose, for correctly interpreting my intent.
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Whomever had neuropathy with Taxotere------Did anyone talk to you about icing during therapy----------I only learned about this week. Please go to taxotere thread and review. Check out last three pages of Catholic thread for Theresap60 comments on Taxotere. It made me question enough that I went to the Tax thread Theresa inadverntently did her own experiment while on tax. VERY interesting on outcome.
Texasrose ---------------you are sooooooooooo right ---same drug toxin given to different people can lead to two totally different outcomes. So wish every person receiving it, deliverying it, ordering it could understand your statement. This statement or a composite should be plastered everywhere in cancer centers
So tired of people recieving the same drug-----saying"I had no problems", Delivering it(nurses)"WE don't see this reaction". Those ordering it' It must not be related, we only talk about cancer here" They are frigging giving us poisons, of course we aren't going to react the same.
There was on article by a researcher for the clinical trials of Arimidex after the drug was FDA approved and all the aftermarket complaints came in regarding muscle/ bone/ joint pain. His statement"We did not have all these complaints while the drug was going through clinical trial. We don't know what to make of it. We will have to go back and take another look" I love researching things----At least used to, brain is not up to it now--------In approxomitaley, 39 years of researching. I never heard a researcher on a clinical trial make the statement he did. I was dumbfounded. I then had to say why? as a researcher would do. 1. do they really care and want to correct something. 2. Is it to cover there ass, by saying publically, that we never had these problems complained of----ergo we aren't responsible for the physical damage. Hate to sound pessimesstic, but i'll go with # 2.
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I have most everything in order. I have written a will, power of attorney, medical proxy, and a statement regarding my end of life wishes. Just as important, and perhaps in some ways more important, I have had talks with my husband about life without me. I have discussed how I want the proceeds of my violin to accomplish. I feel strongly that if he remarries, the assets that I accumulated should be used to help our daughter get started in life.
Equally important, I have had this discussion with my Mother since she is one tough cookie. I am not forbidding a service or party. Doesn't matter what I said and or wrote, the Mother will do something and I wouldn't be able to stop it. She is appalled that I don't want a final resting spot so if she wants a service, how will this harm me?
I have organized all of my client files, properly notating the master passwords, access codes, and a map to the backups. In the back of the Will folder is all the passwords to websites so that my husband can post as appropriate to the communities to which I belong.
And finally, I am teaching my daughter the things I want her to know. She didn't understand how a mortgage worked, or why someone might want life insurance. We have discussed how to have a reasonably priced wedding, how to clean the silver, where the special linens came from. She is paying better attention to my family stories, and watching our marriage as she tries to decide if she wants to marry the current boy. I made her do her own taxes this year, with my assistance. I can't stand that I might not see her grow into full adulthood and find myself pushing my ideas to her more often. Sadly, she still can't manage a clutch, so I can't leave her my cool mini cooper.
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ma111 and others, please lets not devolve to the place where we attack each other. I haven't read anything on this thread that even hints of bullying.
Respectfully, I think the point of someone telling you they had no problems with a particular treatment is to encourage and try to get the patient NOT to anticipate the worst when those problems may not happen. I have lost too many women in my life to cancer -- several of them were quite young. Sadly, many of them were women who were afraid of SEs and who based on the possibility of SEs declined a particular treatment. I wonder what would have happened if they had thought there was a chance they wouldn't have the worst SEs and had tried the recommended treatment.
But like Elizabeth Edwards, each individual must make their own decision when it is enough, when quality outweighs quantity. My godmother went farther in her treatment than anyone I know. I would have given up long before. But it was her decision, not mine.
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susan: i can relate to that so much...i was in the car with my daughter, who is 13, explaining how to build a good relationship with her bank, and how to build a real estate portfolio...then i saw her looking at me like '.....??what the hell is mum on about???" LOL, oh well..hope some of it sinks in.
Texas rose, alpal, ma111: i made the comment that texas rose is young and strong, which i think may have motivated alpal to comment that she did very well, and then etc etc...I should clarify that i did not necessarily say TR was young and strong as a claim that she would handle chemo better than i would. I just meant that her strong/young spirit was shining through. I am pretty young myself to be dealing with this, but have other health issues that i fear would cause all hell to break loose on chemo, the oncs are trying to work on those issues at the moment, and my treatment plan may end up a bit different to the norm if those issues cant be resolved...so i suppose i should be clearer when i say i am afraid of chemo, because naturally, someone may feel a need to try to help by saying they did well. so sorry if this has stemmed from what i said. I would so hate for this great thread to turn into a debate in any way..ma, you make a good point that our personal experience with chemo is just that, but sorry alpal, if you were only trying to put forward a positive experience. I think we are all shocked and sad at the moment, konakat's death has affected me deeply, even though i hardly knew her, emotions may be running high...x
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To all Wonderful people here----------we are all trying to find our way , let no word lead to anger or assumption about what another is saying. We have all been blindsided with something we can't control. WE are just seeking
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I have to comment about Elizabeth Edwards, because it makes me sad to think there are people who believe she gave up. While she kept many details about her treatment private because she didn't want other BC patients comparing their treatment to hers, at the end chemo stopped working for her. She had progression on 3 different chemotherapies. So I wouldn't say that she chose to stop treatment, but that unfortunately the treatment didn't work for her and she had progression to the liver and lungs that killed her.
I'm not sure where someone got the idea that er-/pr- cancer was more or less aggressive? Hormone-receptive cancers have different treatment options, thus different outcomes for patients. But I've never heard that hormone-receptive are more or less aggressive. Her2+ is what shows aggression.
I also disagree that premenopausal women are given so much chemo that it's more harsh on them? Everyone responds different to treatment. Dosages depend on the drug, sometimes are set by body weight and other times by age and other health issues. I had taxol at 34 for 8 months. While I suffered side effects, I was able to live a relatively normal, bald life. I had a very high dose, but was lucky that I never got neuropathy or other conditions that would have made it hard for me to live alone (as I do). Older women in my support group have gotten lower dosages and had a harder time.
I am on Xeloda/Tykerb right now and hope to stay on it for years and years. It's buying me valuable time with a very high quality of life. Everyone needs to make their own choices and do what they feel is best. I support any woman who decides to stop chemo (or never take it). What bothers me is when people make blanket statements about how their side effects would be the same for others, and thus discourage women from trying a treatment that may really benefit them. I hope we can all remember that we speak for ourselves and based on our own experiences.
I have given my house to my parents, set up a living will, given medical power of attorney to the people I want to have it, and made arrangements for my body to be given to a medical school as I described in an earlier post. I feel "prepared" in the ways that I can be, but am still scared of death. And as much as I will plan and organize things as best I can, I also will keep fighting as long as there are new drugs to try. I'm 36 and I have some very big plans for my 40th birthday party!
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Petjunkie-----------I had this long response----------it went to computer netherland----------as long as you are sure that what you have done will not hurt your folks financially --your good to go--literally. Try to set things up that there land taxes are covered for the time period that they stay in the house, Plus homeowners and flood and car insuranse.
When I say literally---it is not intended to be a laugh--------------------it means all bases are covered, everyone is safe from unexpected costs that puts them in finacial trouble.
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Sas-- yes, my parents are well-off financially and have no grandchildren. They owned half my house to begin with, as they helped me to purchase it originally, so we have a tenants in common agreement. Well, we did. When I was diagnosed stage IV I gave them my half of the house (there is no mortgage, we owned it outright). They will sell the house after I am gone, but for now they pay all the utilities, insurance, and taxes. Basically, I live here as a rent-free tenant (and have renter's insurance, too). This way, I have no assets to worry about and there will be no estate taxes. They view the house as an investment they will someday sell. They are also beneficiaries for my retirement account.
I realize I'm in a special situation, being single and having parents than can afford this. But basically, it's how I live on Social Security payments and do not have to worry about housing or medical expenses. (Because I live in their home and am deemed disabled, they can claim me as a dependent. Which means if they pay my medical expenses, including my COBRA payments and co-pays, those are medical deductions they can claim on their income taxes.)
We met with an attorney and accountant to figure all this out, which came at a cost. But it's all settled now and the peace of mind is AMAZING. I am so grateful for the generosity of my parents, it is making my life so much easier. When I'm gone they can sell the house and get 100% of the money, so I don't feel too bad about taking money from them now. Sometimes I feel like I've lost my independence. But as they tell me, I'm just spending my inheritance early :-) . It makes my mom feel so much better, too. They can't control anything, and my mother has told me that it makes her feel like she is doing SOMETHING. She loves that when I feel good, I can go out to lunch with a friend and not worry about if I'll be able to buy groceries that week, too.
It is an amazing blessing and I am very lucky. Others might benefit from looking into some of these options if their situations allow for them.
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Ma111 thank you for this post.
That's life, Texas rose and the many others who responded, thank you so much for the supportive and well thought advice. I am going to find a way to bring up the power of attorney so that her wishes can be observed and I'm also going to find a time when we can discuss those desires.
No, we are not totally sticking our heads in the sand but I want to have every moment we can have and so does she.
For the woman who wrote out the cards, notes, and set aside gifts for her kids but wasn't sure they would want or understand them.....When I was 32 years old,, my 30 year old wife went into labor. There were complications and she died 2 weeks later. Our son is 12 years old. I met my wife when my son was 8 months old. I have been married 11 years.He knows that his mother loves him. He knows that his other mother also loved him. His grandmother is a part of our lives, having dinner with us on a weekly basis and sometimes taking him for weekends. I have her grade school papers,, and a large collection of leters, cards and emails that she and I exchanged during our courtship and marriage. He sometimes has questions for me. I answer them when I can. His grandmother also answers them when she can. I can assure you that he would like to have letters or notes or anything from her that was specifically for him.
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All of these posts are so truly meaningful & real. This thread caught my attention under active topics. I've worked in hospice for a long time. I started because I believe that our passing whatever it is from, is as meaningful as our beginning ( birth). Death is of course painful and horrible but I also learned it can be beautiful. I sat vigil with many patients as they pass, they were all peaceful and some down right amazing. I am not a religious person but many patients that were -lucid held there arms out and indicated there was " something" there to accompany them.
My best friend passed from BC. Mother of an 8 yr old, she fought like hell. When it became apparent that it was time, her Daughter Kaityln crawled in bed with her and said " it's ok Mommy the children in heaven need a Mommy angel to take care of them". Debra said " thank you my love I will always be with you".
Debra passed within an hour. Her last words were " oh it's ok now" with a smile on her face.
I know when it is my time it will be something very peaceful.
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corian, what an incredible post, thanks...to know that it can be peaceful, and often, thanksxx i wonder what they see?, wow.
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Pizza -dad-- your special and all you have done--------LOVE& HUGS&PRAYERS- sheila
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Corian-----------Thank you for that beautiful story Namaste sheila
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Ma111: im on my own with a child, though i have a friend staying with me, she works in the city and is gone 13 hrs of the day. I am finding it hard to shop, drive kids around, cook, carry grocery bags (they make my rib mets/back hurt for 3 days afterwards)...and im only on tamoxifen..either stress or the drug or the cancer is making me vague and tired and often useless....im thinking of you going through this treatment...i hope you have a beneficial response.xx i wish i was nearer..i wish we had more than words sometimes.
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Apha,
I am sorry about your daughter and am glad she had you to help her. Some of us are on our own to take care of our childern and feel they would be better off sometimes when we have the reactions to the point that they have to take care of them selves. Please don't take my post as offensive.
Texas, one and a half years and I still do not feel toes or fingers and now I am back on it. The NIH is going to make a case study out of me and I agreed to let them biospy to see if they can figure out why taxenes cause neuropathy so they can start intervening. First they have to know why it is caused.
Susan, Make sure the proceedes go into a trust now, or if your husband remarries, a new will in case, god forbid happens to him. I have heard stories of the new husband dying and it turning into a Cinderella thing. Talks with family is very important!
Pizzadad, nice hearing from you, thanks for the update.
Sas, I never heard of the icing thing before, I'll have to check that out as today I almost fell flat on my face because my legs didn't want to work, (taxotere).
Corian68, What abeautiful story! Thanks for sharing. It's nice to hear that it doesn't always have to be so grim.
Thatslife,It is hard when you are the only one with no help to do the simple things in life. It is also hard watching my daughter doing without a life. When this 1st started she was a junior in high school and was going to take college classes and apply them to her senior year and graduate high school with 18 credits. Well I couldn't take her, so she graduated high school, but with no college credits. I hate seeing her life affected so much. If I was dead, my sister who lives in VA would have been able to handle getting her back on track. She will be 18 next month and is accepted into college. She has done without so much because I have been sick a long time now.
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Thatslife-
I wish I could help!!! My heart is heavy thinking of what you are going through with minimal help. Is there a local BC support center near you that can provide help? Say with grocery shopping amd errands? We women often get the short end of the stick...you deserve a little help right now!
I wanted to add this...I sat with my Grandpa when he was dying. He was 88 & had emphezema. It was very hard for the rest of the family but I stayed until the end. He could not move, his eyes were open but could not speak. A few hours before he passed I was sitting in a chair next to his bed. He started to scratch the bed rail. I got up & looked at him. He looked right at.
me, I asked him if he was ok? Needed more morphine? He had a pump so it administered on a schedule. Didn't seem to be in pain....He just kept blinking & scratching. He was trying to tell me something.. He looked away corner to the corner of the room and was watching it. I held his hand trying calm him.
As I sat there with him I thought I smelled my Grandma's perfume? It caught me off guard a bit, she passed some 20 years before. I looked to see if the nurse had come in....nope. I got the chills I stood up and asked him if it was Grandma? He kept blinking, so I did what they do in the movies...blink once for no amd twice for yes. Is it Grandma your seeing? Two blinks...asked him again...two blinks. Of course I start crying, I lean over and hug him and say " of course it's her she's come to take you" ..then I made a wise ass joke and told him - he has some " Splaining to do" ( he had remarried after she died) lol! He closed his eyes and one tear rolled down. He went with her that night to where ever we go.
And I will be forever grateful to have been there.
Sorry for all the mushy stories but I believe in living and I believe in dying. It's something we ALL have in common. We are all going to die. Some of us sooner than later...I pray that we as a society can learn more about dying, gawd that probably sounds morbid!! But the 11 deaths that I accompanied they were peaceful and when my friend Debra said " oh it's ok now" it changed how I feel about death. She saw something or felt that it would be ok....
It will be ok.0 -
Ma111
((((( HUGS))))0 -
corian, thanks, im ok, there isnt an advanced bc group in my town, and i have never heard of a bc support center. I had a leaflet arrive in the mail from our biggest supermarket chain here, saying they now do online shopping and delivery, so i have given details, and will start shopping online soon, if only to save my back...i asked to see the cancer social worker at my cancer center, she more or less told me there is no help available until i am admitted to hospital for something, and then help can be arranged, for light housework, mobility issues etc..otherwise, i have to wait for when i access hospice/palliative care..i must admit i was shocked that there is so little available here..It is early days for me, im not suffering as much as many others here, but it sure is tiring...and this is the one thread where we dont have to apologise for being morbid, ma111's orders lol, so dont apologise
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to all here that believe in life after death this story may have meaning,
A few seconds ago sas-schatzi wrote:
Their is a nurse Karla on the Nurses thread who described that when she was on a trek in the Himalayas. She would observe the Sherpas greeting each other with hands as folded in prayer. Their greeting was Namaste. She asked for a translation. They told her it meant "I SALUTE THE GOD WITHIN YOU" After hearing that story, it so gripped me, within the deep soul of me. The strength of the statement in analysis goes to the heart of our belief in God. For if we believe that this statement regarding God-- being within each person. Then he is a part of our being. If that be true, then we are each joined together with him, and therfore we are each apart of each other. So, what happens to the one, happens to all. Yes Paula, thank you for reminding me. A periodic telling of the story helps my forgetful mind. Namaste Sheila
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Thatslife, register with Palliative care as there are things that they can do to help you. I know it sounds premature but I have done this purely because once registered it is easier to access help as needed. It's just a phone call and a visit from a Palliative care nurse who will assess you and your needs and go from there. Good luck!
Love n hugs. Chrissy
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thanks chrissy it will be confrontational, but if i can get a little help, that would be great. i think im ready for some help, pain levels are rising, hoping its the tamox kicking in more.
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