How to Choose Between Quality Versus Quantity of Life

[Julie YW]

Hi All,

I wanted to share this blog post I wrote about how different people choose to deal with their disease and how they confront death. Sorry this is redundant for those of you who are connected to me on Facebook. But I guess here I was hoping to start a conversation about how you choose or have chosen to live with your disease? Does quality matter more to you or does quantity matter; the answer seems so straightforward but I don't think it is when you have young children. Where do you or will you draw the line?

Anyhow, I miss Belle's insights on her blog. I know how much she taught me in letting me know what was ahead. I wanted to share this post because I think it's one of those entries that might get you thinking.

https://julieyipwilliams.wordpress.com/ ... mment-1085

Julie

[KWT]

This was an excellent read
Thanks Julie.

[sjring]

Julie, that was beautifully written.

Since you said you were hoping to start a discussion on the subject, I'm happy to start off with a few thoughts.

I've had two people who were close to me pass away since I began this journey. My grandmother, who was 5-weeks away from her 101st birthday, asked to be placed into hospice. She was a vibrant woman who had congestive heart failure that was progessively getting worse. She was still living in an independent living community, but it was becomming clear that staying in independent living was not going to be feisable for much longer. At the time she made the decision, she was in the hospital as they were trying to clear the fluids from her lungs and stabalize her blood pressure. Ironically, she made the decision to enter hospice at the same time I was having the first diagnostic CT that led to my cancer diagnosis. She went peacefuly, my mother and I by her side. I would say she choose quality over quantity, but there is no doubt she had the quantity too.

The other was my aunt who had pancreatic cancer and passed just a few months ago. Through an odd twist of fate, my aunt and I had the same oncologist. Chemo was rough on her and she made the decision fairly early on to stop treatment save for some of the "special" baked goods one of my cousins made for her. Eventually the disease spread to her liver, but surprisingly she lived for over a year treatment free, and had an exceptionally good quality of life until the last 5 days or so when she became incoherent and bedridden, finally slipping into imortality. She did not seem to be in pain, although hospice was giving her pain medications when she appeared to be uncomfortable in those last 5 days, though she could not really communicate.

For my part, I want to find a balance between quality and quantity. I have no idea what that balance looks like. I don't want to be a burdon to anyone. If I get to the point that I need around the clock care, I hope it is for only a brief time. As much as I want to be with my family for as long as I can, I don't want to be remembered as someone they had to take care of, or at least that the memories of me heathly are so over-abundant that they drown out the sick me. I have certain things I want to get done before I go. I refuse to call it a bucket list, but certain memories I want to impart. And I don't want to rush to accomplish them. But if pushed, quality is way more important, at least to me. Not perfect quality, but a reasonable quality.

[Voxx66]

My perspective is different as I have no wife or children. For me - quality of life is key. I have currently stopped treatment for exactly that reason and will only restart it if/when a good option presents itself. Right now I am at the stage of wanting people not to swing chickens but to keep them so they can send them to Asclepius on my behalf ha. (This refers to the death of Socrates as related by Plato in his Phaedo just in case anyone is confused)

[Voxx66]

Oh and Julie - I very much appreciate the Camus quote.

[ktwmn]

(And as an ex-Classicist, Voxx, I appreciate the reference to Plato's Phaedo).

[Maggie Nell]

Did someone mention Asclepius?

I have recently joined this forum and while truffling through the archives, found this
thread referring to contributor, Marc (lohidoc) - thought I'd drop some click bait in here:

For those who didn’t know him, because he was more active in the board in previous years but not lately: when he got diagnosed with lung mets and two retroperitoneal tumours in June 2012 (he was NED three months before that), Marc, who was a physician, refused chemo and opted for his own path with an 'old' and 'experimental' (effective) immunotherapy –Coley’s fluid/toxin or vaccine. You can read the reasons of his election in this entry in his blog:

viewtopic.php?f=1&t=48423

https://marcdu4.wordpress.com/

[Ron50]

I really don't believe that stopping treatment will result in a more pleasant death from cancer, quicker , yes but I have watched many friends pass from cancer and it has not been pleasant. I have had experience on the other side. I was dxed with stage3c colon cancer in 1998. My surgeon and onc both assured me that it would kill me based on it's aggression and rapid spread. I have survived for nearly seventeen years since cancer. It has not been a particularly pleasant survival with several serious auto-immune problems threatening me at various times. Do I blame cancer and treatment for the problems. Not blame , but probably consider them responsible. I blame life. From the day we are born we are on a journey to death. I could have chosen to take an early count and let the disease take its course. Instead I chose to try to do what we seem to be designed to do...survive as long as I could. I think it is in my nature to survive , so I let nature take its course. I wish you all well with your decisions on life , it is one of the few things you truly have a say on. Hugs to all .Ron.

[Annemiek]

That rings so many bells and so many of these thoughts are going through my mind at the moment. i'm still at the beginning of the journey and in my dark moments of chemo depression I want my life to be over quickly so my daughter can move on with less pain, the longer we are living in limbo and uncertainty, the more it hurts right?
But most times I hope that I can be strong enough to be there for the longest possible time, as every hour of the day creates a new memory that lasts her lifetime and if I can guide her and show her how I deal with this disease, the stronger it will make her.
I don't want to think where the cut off point will be yet.

A thermo dynamics professor wrote in my coursebook " enjoy life's phase changes" boy, this phase change is hard to enjoy, but it does make living much more special.

Thank you for sharing this

Annemiek

[Frenchie's Wife]

I chose quality over quantity almost a year and a half ago and quit chemo abruptly.
I did not want to spend the rest of my life on chemo being sick before dying.
Surprise, surprise, I'm still alive and kicking butt. My QOL is fantastic. That was the
best decision I ever made and would do it again in a heartbeat. My kids are all grown
which made the decision that much easier. I was given 6 months to live when first
diagnosed. I refused to believe them and found a doctor willing to take chances.
I have made plans for this summer and intend to follow through on all of them. I have
had several challenges over the course of my journey and believe that attitude is everything.

[KWT]

I chose quality over quantity almost a year and a half ago and quit chemo abruptly.
I did not want to spend the rest of my life on chemo being sick before dying.
Surprise, surprise, I'm still alive and kicking butt. My QOL is fantastic. That was the
best decision I ever made and would do it again in a heartbeat. My kids are all grown
which made the decision that much easier. I was given 6 months to live when first
diagnosed. I refused to believe them and found a doctor willing to take chances.
I have made plans for this summer and intend to follow through on all of them. I have
had several challenges over the course of my journey and believe that attitude is everything.

Your plan was an awesome plan, Frenchie, no one could dispute that.

[mstults]

I'm not sure I have the courage to choose quality over quantity. I'm not necessarily afraid of dying, I have a strong will to live. If I was in pain or side effects were worse the decision might be easier. Almost 3 years into the journey, I'm still willing to endure the bad days in return for the good ones. I've had some challenges lately that even though I don't think are the result of cancer or the treatment are nonetheless worsened by the cancer. I still feel that I can overcome these challenges and continue the fight.

[KWT]

I'm not sure I have the courage to choose quality over quantity. I'm not necessarily afraid of dying, I have a strong will to live. If I was in pain or side effects were worse the decision might be easier. Almost 3 years into the journey, I'm still willing to endure the bad days in return for the good ones. I've had some challenges lately that even though I don't think are the result of cancer or the treatment are nonetheless worsened by the cancer. I still feel that I can overcome these challenges and continue the fight.

Mike what did they figure out on your Cea rise?

[weisssoccermom]

I am not in the position that most of you are, so many of you will say that I have no right commenting or can't possibly understand. I do, however, want to relate to you a long conversation that Belle and I had in November of last year. If you remember, Belle was having a really difficult time with the immunotherapy trial that she was on. The side effects were rough and she wasn't even able to take the drug as often as was recommended. I was quite well aware of Belle's feelings.....she had to do whatever for the sake of her kids and, as a mother, on some level, I understood that attitude. However, on that day, Belle was crying....she was really frustrated by how she was feeling, she couldn't take the dose that they wanted, she wasn't rebounding between infusions, there weren't many, if any good days, etc. So, I asked her what may sound like a 'mean' question. I asked her if she felt that by putting herself through this trial, she was really doing her children any favors? You must understand that Belle really couldn't any participate in her kid's activities. Yes, she was physically 'there' for her kids but was she really 'THERE' for them? I wasn't trying to sway her either way, but rather I just wanted her to think about all the different aspects of her choice and decide for herself what was really the best for EVERYONE, including herself. That was one thing that Belle had a difficult time doing....putting herself and her feelings into the equation. I got to tell you that conversation was really difficult and there were tears all around. A little less than a year before, we had had a similar discussion (see Belle's blog entitled 'was it worth it') but at that time, Belle was still able to be the MOM that she wanted to be. As Belle later recounted to me on numerous occasions, that day on the phone 'allowed' her to think about the possibility of stopping treatment and picking quality over quantity of life.... I gave her permission to at least think about herself. I have to be honest with you, after her decision was made every time Belle brought it up and 'thanked' me for giving her the courage to think about stopping treatment, it made me feel uncomfortable. I didn't want people, particularly members to know about that discussion because I know that there will be some who think it was the wrong thing to talk to her about. However, as a friend, what are you supposed to do when you see someone you care about suffering? How are you supposed to approach it when a person you love is crying, falling asleep in the middle of a conversation, is emotionally fragile and is physically spent? How does one 'encourage' that loved one to continue living a life that is so full of pain and suffering? Were her kids better off having their mom suffer and was it in their best interest to have them see her suffer? I recounted to Belle a story of a young girl who was in Erik's class. This young child was only 3 when her mom was diagnosed with breast cancer. Initial treatment seemed to work but soon the aggressive cancer was back and the mom pulled out all the stops to prolong her life. Lauren grew up knowing a mom who was always sick, always in bed, with no hair, who couldn't come to her school events, etc. Just after the kids 'graduated' from 6th grade, Lauren's mom passed away....but as Lauren will tell you, she doesn't have any nice memories of her mom. Lauren actually never 'knew' her mom.....not in the sense that her mom had hoped. I related this story to Belle to tell her that, although she had been, up to this point, the mom that she wanted to be, was continuing with treatment that involved pain, real physical symptoms like vomiting, extreme fatigue and pain allowing her to be the mom that she wanted to be and especially when all the tests had showed that the trial drug wasn't working?

I watched a friend recently pass away (a few weeks before Belle) and listened to her frantically state that she couldn't die yet....there was still too much to do and too many things to say....even though physically there was no way she could do anything. This same friend had closed her eyes to the fact that her condition was so dire and put her head in the sand....she kept trying different drugs, etc. in order to do anything and everything to prolong her life. When the last 4 weeks came and one doctor after another (yep, she still got 2nd and 3rd opinions..even then) told her that there was nothing else that they could do for her, she fought death and her whole family was shocked when the end came because she had always put on such a positive spin on her condition. Her family wasn't prepared and kept whispering to her to 'just eat' to get stronger to continue to fight. I feel for her family, because they are left behind, with questions still unanswered, with things still left unsaid.....all because Mariye chose quantity over quality of life. In her mind, she was doing this for everyone else and not for herself (even though her kids were all grown and quite capable of taking care of themselves). Her death was not serene...rather it was cruel, all because she kept fighting to live....her will was strong and her family ultimately had to watch her suffer on a daily basis until her body gave out.

IMO, each person has to decide for themselves what they want to do and be comfortable with that decision. I remember a few years back we had a member whose loved one was obviously dying and yet this member couldn't accept it. She said that a person should always try to everything possibly, including trials, even if that treatment meant it only extended a life by three weeks. I was aghast....because, IMO, what is the point? I know that when Belle made the decision to quit treatment, it was done with the belief that she would be able to live a relatively normal life again....no matter how long that time frame might be. No one had any idea that Belle's time on this earth would be so short, but for her, even though she was still very tired and couldn't drive any longer, she was able to spend 'quality' time with her kids and talk to them about some things that she wanted them to know. IMO, Belle was at peace and not so agitated and frustrated in her last weeks on this earth when she was still cognizant of what was going on. Regardless of the disease or condition, it will always be a difficult decision for any of us to make for ourselves or to help a family member/loved one have to make....I only hope that when that time comes for me or for my family member, I can make a decision that is best for EVERYONE, including myself.

[Kiwi Debz]

I want to relay my story with regards to my beautiful little boy Tom.

Tom was born with cerebal palsy and severe epilepsy. Mentally Tom was with us in that although he could not speak like you and I he knew what was going on. We developed our own very special way of communicating for example, blinking for yes. Physically Tom was in a wheelchair and was quadriplegic.

We lived a lovely life, yes it was tough and at times as he grew the seizures went out of control having sometimes hundreds per day. But, we laughed, we learnt, we lived an abnormal life as normally as possible and it was a quality life.

Due to his immobility Tom had recurrent bouts of pneumonia. When he was about three and a half I had to have the DNR discussion and prognosis discussion with the pediatrician. For me this discussion felt like it came out of nowhere. I had been so busy looking after Tom and his little brother that it had not occurred to me that I would ever reach this point. (And did all this alone after their dad skipped out but that is a whole other story).

After having this discussion I decided that for me, and I hope for Tom, that it would always be about quality of life. While we continued to have far more good days than bad we would continue treatment as needed but if we got to a point whereby his quality of life was significantly diminished then we would go onto palliative care or hospice with the aim of having Tom comfortable.

Fast forward twenty months and we reached that point. Toms ongoing bouts of pneumonia became more frequent and his little lungs were just not recovering. I decided, enough. We went onto hospice care, I had him at home and did the care myself with visitations from the nurses and doctors and eight weeks later, Tom passed just after his fifth birthday.

To this day I still wonder, what right did I have to decide whether a child, my child, lives or dies. I console myself with the fact that it was about quality of life and that quality was no longer there.

I write this in tears as it still brings it all back, fourteen years later, like it was yesterday. You never get over losing a child. You just get through it. Oh if I could only have my brave beautiful boy back.

Now I know that I may also face the same decision for myself and I stand by what I said regarding Tom when it comes to myself. Right now I have a great QOL but when the time comes that I do not have that QOL then I will stop. I only hope that I am brave enough to do it as Frenchie and Pollo have done. I so admire you both.

Deb