Wednesday, September 29, 2010

Letting Go - an article to read

Letting Go

This is a response I wrote on a thread on CF2Chat.  Please read the article and respond.

"The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task. Death is the enemy. But the enemy has superior forces. Eventually, it wins. And, in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knew how to fight for territory when he could and how to surrender when he couldn’t, someone who understood that the damage is greatest if all you do is fight to the bitter end."

Is my favorite quote from the article.  And I can not agree more with it.  You may be deemed a hero for standing up and battling till the last breath, but what is it for?  Especially if deep down inside you knew you would be battling till the death.  Wouldn't you want to enjoy those last deaths?

I have 2 examples I am going to draw from.  One is my step-mom who passed away in July and the other is my pop-pop who passed away 4 years ago next month.  They are opposite stories with Cancer as the leading player.

My Step mom was diagnosed with breast cancer 6 years ago.  They treated it for a year and it went into remission.  A year or two later it returned.  Again they treated it and it went into remission.  Two years ago she was again diagnosed with breast cancer but also in her lymph nodes.  She decided to treat it aggressively again and hoped it would go into remission.  It didn't.  It spread to her bone marrow.  She was on hardcore chemo, trying the IVs, testing the chemo pills.  Anything she could to stop it.  She was still working and exhausted.  When she got home from work she fell asleep and slept till morning. She had stopped living.  But she still went on.  Eventually she decided to stop work and concentrate on beating the cancer.  She continued chemo and radiation, whatever would "help", only to have it spread to her brain this past summer.  At that point it was obvious to most of us that she would not beat the cancer.  For it to spread while getting racked with major treatments, meant it was a doozy of a disease.  But still she fought on with the chemo.  The middle of June she was admitted to the hospital after calling 911 because she couldn't stand up to get out of her car and she was alone.  She never left the hospital.  3 weeks later, as she was laying there totally unconscious, my dad made the choice to stop treatments and let her die peacefully.  I still remember the phone call.  He was devastated but could not watch her suffer anymore.  The following day she passed.

Her last year was horrible.  She slept almost 20 hours a day and had no energy.  She was not the same woman he had married.  She had died already, but her body was still alive, being kept that way with the chemo and drugs.  I do not blame her for her choice to fight.  Personally I would not have tried for so long, but then again I have been facing my mortality from age 5.  She wanted to see her grand children grow up and to live longer, she was only 65.  But at some point don't you have to ask yourself quality over quantity?

Then there is my pop-pop.  My mom-mom had died about 1.5 years before he was diagnosed with lung cancer.  Now this was a man who had a stroke at 35, a massive one, recovered and was NEVER sick another day until he got cancer.  We were upset, especially when he told us he was denying treatment, much like my mom-mom had (she lived 5 days after finding out she had brain, lung, liver, kidney, and bone? cancer).  But we respected his choice.  It was his life.  What we were not prepared for was learning how bad the cancer was.  He had told us it was OK, it wasn't bad.  But as he progressed he made my mom and aunt legally allowed to talk to the doctor.  He told them it was stage 5 and he wouldn't not live much longer.  So we went from thinking he had months and months and months to live, to maybe having only one month.  He had kept it from us so we wouldn't try to pressure him to get chemo etc.  We found out in March about the cancer, and in July or August how bad it really was.  The beginning of October he got really sick and my mom and aunt could not take care of him.  They had moved in and taken leave of absences from work to take care of him full time.  We had him put in a nursing home for a few days so they could fight the infection that had taken over.  I remember visiting him on my way to my birthday dinner.  I told him I loved him.  It was the last time I would see him awake.  He came home a few days later and hospice was sent out.  They were wonderful.  He had stopped eating and drinking and we knew it was a matter of days.  October 20th I went to the movies for the release of the movie Flicka with a friend of mine.  I was planning on getting up early the next morning to go see him again.  But an hour after I got home my mom called and told me he had passed away.  I rushed over to see him and say goodbye.

My pop-pop lived 6 months with no treatment.  Though he may not have been in excellent health (duh) and declined rapidly towards the end, he was able to spend time with his new great grandson, his kids and his grandkids.  My nephew remembers him, through pictures, as a fun happy peaceful man.  Not a sick man.  I still remember my pop-pop sitting in the chair in the driveway on mother's day while my nephew ran around him and slapped him high-five every time he got to him.  I've never seen my pop-pop so happy.  I know moments like that went through his head in his last few hours.  The point is he enjoyed his last moments on earth and did not try to fight them.  He knew cancer would kill him and he had accepted it.  And once we knew his decision we accepted it as well.

I think that any disease can be fought, but, like General Lee, you need to know when to surrender.  You need to know when you are tired of trying and want to just live in anyway you can.  Even if it means stopping treatments, especially if it means you stop treatments.


  1. I know I don't comment often but I do read every post. This one got to me. I felt defeated when reading your words "You need to know when you are tired of trying and want to just live in anyway you can. Even if it means stopping treatments, especially if it means you stop treatments."

    For someone diagnosed with Cancer later in life, after what was probably a pretty decent/awesome life, having that choice is a luxury. I wish we could only be so lucky. I've witnessed first hand what it's like to "know you are tired of trying" and stopping treatments just so you can "live in any way you can." And with CF, it's not living. With cancer, you might have a bad last year fighting. But maybe a few good months before that last year. And if you choose not to fight? Well, maybe a few months.

    Unfortunately, CF doesn't ever work this way. You stop doing your treatments and you don't just have one bad year, you have many. Your landslide is slow, and probably just as painful as cancer. Who knows how long you'd hold out on just .6 L of oxygen in your lungs. And I've seen what .6 L of oxygen looks like, and I think I would take cancer anyday over what I've seen.

    So I am choosing to live my life in any way I can. But in order to enjoy my life, my medicine needs to be a part of it. I need to keep fighting so I can keep on enjoying. This fight is hard, yes, but it needs to be done. Even when I'm tired, and I want to give up, knowing that I'd be shorting myself of good times, with a few 'simple' -- okay maybe some not-so-simple- meds keeps me going. Life isn't fair, but it doesn't have to be miserable.

    I hope you're doing okay. I hope you have decided to keep fighting.

  2. Oh I am fighting tooth and nail!!! I live my life the way I want too. This article is more for end stage anything. Knowing you have 6 months max to live, if that. Not those who are in the midst of still living and fighting :)

  3. Amy,
    Very good article! I couldn't agree with you more. I had several people that asked me why I didn't 'harass' Mel into fighting longer when she had decided 'enough was enough'. She knew it was the end of her fight. It would be disrespectful to not let a person live it how they want.
    Thank you for such good writing....
    Oh....and keep up the fight girlie!!!! :)

  4. I agree with you 100%.Medicine exists so that we can make choices, and many people are caught in the "i have to be a fighter" mentality and aren't able to enjoy or peaaceful come to the end of their life, afraid of everyone's idea that to die is a to give up, some sort of failure.

    One thing about life -- not a one of us is getting out of here alive.