A place to talk death and dying issues
Comments
-
Calico,
Thanks for your kind words. Whenever I offer my own words or the words of others, it is with the hope they will be meaningful to at least some listeners. I like imagining the ripple effects of pebbles tossed into ponds.
I'm grateful for all the voices of those who come here to share meaningfully, yours included, and for those who come, but do not post, in hope they will find something meaningful to take away and ponder.
0 -
From Dr. James Salwitz at his blog, Sunrise Rounds.
http://sunriserounds.com/sometimes-just-say-no/
Sometimes, just say no
by James Salwitz, MDLet me be clear. I have spent a career, my adult life, 80 hours a week, 131,000 hours, fighting the dread disease; every method, every drug, every machine, every medical technique, every sinew of my being, to control or cure malignancy. A synopsis of my existence will say, "fought cancer." Nonetheless, let us take a step back, if just for a moment, and reflect on the idea of saying, "no."
In 2015, approximately 60% of patients with cancer will be cured. This is a remarkable improvement over a generation ago, when the disease was usually fatal. Sadly, this means that four out of ten cancer patients still die of their disease. This is a terrible, tragic truth. It is also a silent truth.
Nearly 100% of patients with metastatic lung cancer will die. However, studies indicate that 70% of patients with advanced lung cancer believe that the purpose of chemotherapy is to cure. Similar data and experience exists for most other aggressive cancers. Patients often lack a realistic understanding of what treatment can and cannot do.
Is this denial? Are patients unwilling to face the harshest reality? Sometimes. There is a limit to what each of us can handle; how much anxiety, threat and bad news we can cope with at any moment.
However, I believe that one reason many patients do not have a realistic understanding of the limits of medical therapy is that the list of treatment choices presented by their treating doctors includes drugs, surgeries and radiation, but rarely does it include the words, "and if you decide, you do not have to do anything to treat the cancer at all."
There is no law that if a treatment exists with a small chance of extending survival for a small amount of time, that it is necessary to take that treatment. Just as there is so much bad news each of us can handle, so there may be too much traumatic therapy with which we can cope. There is a hard line for each of us after which life is not worth living.
Still, if any sort of treatment is available, no matter how limited the benefit, doctors rarely offer "quality and comfort," instead of active therapy. We do not put into perspective the reality of a fatal disease, the potential complications of medical treatment, or give a clear picture of what may be coming in the weeks and months ahead.
We act as if not providing therapy is "giving up," instead of reassuring each patient that we will never give up on them or on life, but that treatment may cause more suffering than benefit. We do not allow each patient the opportunity to balance their hopes, dreams and fears with the reality of what can actually be achieved.
Let me be clear. Even though I have spent my life fighting cancer, I do not have the ability to judge what life means to you. Each of us should have the freedom, opportunity and duty to decide, for ourselves, how to live life, especially at its end. I hope I can step back so that each of my patients has the chance to reflect and consider their future, and even if they to say "no," still be by their side.
0 -
thanks for this. Reminds me of the book Being Mortal.
My issue is "when is the time to say no". At this point, from 2002 at first dx and even up to now (two major chemos) I am not ready to say no more. I think it all has to do with response and how much tx is working or not.
I say to myself and my loved ones " when stuff stops working I am done". Calling hospice. Enjoying the hospice drugs and saying goodbye to my people I don't believe I would be one to keep chemo going to live a few more weeks. But the thing is, I can't know that now or what I will do at the end.
My onc knows. I made it clear to her "I want to die from cAncer and NOT from tx.
And do it goes. Into unchartered territory. Being Mortal helped me think about all if it. This info helps too.
And the beat goes on.
0 -
Brendatrue, thank you for that article. I am going to print it out and give it to my oncologist. Although I am currently NED, I do have the expectation that he will continue with the same compassion and caring when the time comes that the treatments stop working.
And that he will see that I understand that it is not his failure at that time. And that I will be just as thankful for the compassion and care as I am now
0 -
I feel the same, Scuttlers...very safe & sound with my onc. A relief in so many ways....but for now, he is my greatest cheerleader & I appreciate that too!
0 -
I love that my onc continues to give me options, though I am acutely aware that at some point there will be no more, or I will be just tired of chemo. He and I have been partners for many years and I feel confident that he will be honest with me when it is time to say no to chemo.
0 -
Hi, I made the choice yesterday to discontinue chemo. All the news coming from my labs and physical exam were negative, and were bad enough that I couldn't have proceeded with chemo yesterday anyway. My onc and I had the, "When is enough enough?" discussion last December, so he knows I didn't want to chase pots of gold at the end of rainbows. If I believed there were any other realistic choice that wouldn't just bring me back to where I am now, or worse, I would try it, but I don't believe there is.
Love you all and thanks for being there!
xoxoxoxoxoxo
Calico
0 -
o calico.... wishing you ease and peace and a good measure of joy to the end of your days. Your presence here was lovely to behold, and yes I am admiring of your true bravery. It seems to me there would be a strange kind of electrifying peace with the making of that decision. and I will remember you
0 -
CalicoCat, I admit, it is hard to read about your decision, yet I respect your choice. How are you feeling about it all? You are so special and bring so much to the boards.
0 -
Calico - I'm sad to read this but I respect and admire your decision. You are a very special person - you were the first one to respond to my first post on this thread. How are you dealing with this? Sending you hugs and love.
0 -
Calico - sad to read this but know that you made the right decision for you - sending love and hugs, S.
0 -
Calico
Thinking about you and standing beside you. Courage comes to mind. These decisions are tough. Prayers the next days ahead are gentle on you and your loved ones.
Sigh.
Diana.
0 -
Thank you, sweet sisters, you bring me great comfort from your understanding and support. No one gets it like you do, not my DH, not my onc, not my other family members. It's not that they don't want to; they just can't.
I expect I'll have to recalibrate my expectations of whether or not I had a successful day. I hope I can remain at home, but DH is 77 and can only handle so much. We will get hospice. I do have long-term care insurance. We'll get to see if the premiums we've paid all these years were worth it. I will go into a nursing facility if either one of us needs that for our QOL. This is one of those times I am grateful I don't have children. I don't think I could bear their pain and mine, too.
Right now, we have to drive 2 hours round trip to get the Nupagen (SP?) shots. Medicare won't cover them unless delivered as part of a doctor's visit. 7 years ago, my secondary insurance (Tricare) would cover them, and I was able to give them to myself at home, but Tricare is going at a snail's speed this time.
Love to you and off to get my shot.
xoxoxoxoxoxoxo
Calico
0 -
Dear Calico, sending you love and hugs across the miles. Holding your hand tight x
0 -
Calico, Me too. I hope you get your wish to be home and that you can stay as comfortable as possible.
0 -
Calico - I hope you get what you want or need and that your insurance cooperates. You deserve the very best!
So, after much thinking and postponing, I finally made an appt at a funeral home on Friday afternoon to make and pre-pay all my funeral arrangements. Very short and cheapest I can get. I don't have children and don't want my sisters or BF to deal will all this. Now I only have to tell them when signed and sealed on Friday. I think I will feel relief, in fact already feeling it.
0 -
Calico, some days I try to imagine what it will be like to make the decision to forego treatment that's considered life-prolonging, and I realize that I can only imagine.... I won't know for sure how it will affect me until I actually make that decision. In a way I compare it with having tried to prepare myself for an eventual diagnosis of mets when diagnosed with early stage BC then finding that the actual experience of being diagnosed with mets was much more intense than I could have imagined. We can prepare ourselves just so much, then we have to trust we will have what we need within ourselves (even if it's motivation to learn new skills) and with the support of others to adapt and cope. It seems our life experiences bring us back to the importance of trust over and over again.
You are so kind to entrust us with the news that you have decided to stop chemo and to move toward management of symptoms and comfort care. I hope you deeply know that I and many others here care for you and are grateful for all the gifts that you bring. As your life continues to unfold, I hope you will experience more and more peace, the utmost of comfort, every moment of beauty and joy possible, and the solace of knowing there are those who hold you in their thoughts and are willing to offer genuine support along the way.
0 -
Calico - Gentle hugs coming your way and I feel it a great honor that you have shared with us.
As I watch others who make this decision, knowing I will need to some day as well, I gain insight and strength
Thank you
0 -
I keep typing...and erasing. I'm just sad...but I'm thankful, mostly that you've been able to come to this decision on your own-with the deepest thought of what truly living is all about-and that you're sharing with us, so that we may hold you in our hearts and prayers, and yes, grieve but prepare as you have done. I hope that you have many, many peaceful days...and I have that little voice in my heart asking for a miracle to heal you. Love & thanks for your part in our lives, dearest Calico. XOXO
0 -
calico--sigh. I don't know what to say except thank you. Thank you for sharing a part of your life with us. We will continue to be here for you. Sending love
0 -
Calico, you have made a decision that we will all have to make at some point in our future. Please let us know what you need from us. Your courage in sharing your decision is something I hope I can emulate when my day comes. We want to give back to you all the support and caring you have given us
0 -
Linda E54, I am happy for you and your family that you felt the time was right to move on funeral arrangements. I am slowly taking care of arrangements and that brings me peace. I got the information today about how to change a 527 college savings plan so that my husband would become the "owner" and my sister the successor owner. The plan is for my niece who had the misfortune of having my brother and his ex-wife for parents. I so want things to transfer easily when I'm gone. My DH will have enough to deal with at that point.
xoxooxoxo
Calico
0 -
Calico, you've made a very difficult decision. I wish you the very best. Peace and love abound, and may the rest of your time be lived just as you wish.
Pam
0 -
Calico - you are so kind and thoughtful to make those plans for your niece. The appt with funeral home was this afternoon. As much as I felt relief, I woke up this am with such anxiety that I chickened out and cancelled the appt. I hate not being able to move on with this. I'm having a brain scan today to see what's cooking up there, I guess too much in one day. And although I plan on taking the cheapest, it's still quite a chunk of money and that gets me nervous.
How are you doing? I hope your insurance has been sorted out. I think of you every day. Gentle hugs coming your way.
0 -
It's OK, Linda, the only reason for you to do anything right now is to make you feel less, not more, stressed. Maybe you could work with the funeral home to just work up an estimate, give that to whomever would be making your arrangements so they know your wishes, and try to save enough money to pay for it without committing the funds at this time.
My mother died in May, and had a pre-paid burial plan that I thought would cover everything except obituaries in the newspaper, flowers, death certificates, etc. While that's true, those things can be very expensive in themselves. I didn't go to the funeral, but handled getting it paid for as I am administrator for my mom's "estate", such as it is. She was on Medicaid and had very little money left. As it turned out, my siblings went a little bit overboard on the extras, and it ended up costing the 4 of us about $1K a piece for the "extras", even after Mom's prepaid burial plan.
We have a great organization called the Neptune Society in CA. I don't know if they are in every state. They cremate and return the ashes for very little money.
No matter what you do, you can be confident that the world will keep turning, the sun will come up every day, and your loved ones will manage when you leave the planet.
xoxoxoxoxoxoxo
Calico
0 -
Thanks Calico. I got an estimate and looking at my finances right now is not the best idea. I have good life insurance from ex-employer which would be more than enough to cover the costs. So perhaps I'm putting too much pressure on myself. I have to talk to my sister and niece who are the "lucky designated" to handle my affairs. They will have to listen to my wishes sooner or later. Every time I broach the subject, my sister starts crying and it breaks my heart. I will find the right setting and get this sorted out for my peace of mind. I'm the youngest of the family and they just don't accept it.
Have a good day Calico. I feel I'm burdening you with this when you have so much on your plate, but I thank you for your input. There's more clarity in my head!
0 -
No burden at all, Linda, it helps me to process and consolidate my thoughts.
xoxoxoxooxo
Calico
0 -
And what I haven't said to everyone yet is that your loving support has been a beautiful gift to me. I feel so much more peaceful now thanks to you.
Love you, Sisters,
Calico
0 -
Linda, hope your scan goes well. I think having your wishes laid out is plenty. The arrangements can be paid from your insurance. We did this with my mother in law and it worked out easily. Maybe putting it in writing with phone numbers, etc and putting it in an envelope for your sister. That way she doesn't have to get upset about it now. I did this and out it all in a binder for my husband when the time comes.
Peace to you, Calico.
0 -
Romansma - that's a great idea. That's what I'll do.
Calico - we love you too.
0
