Friday, November 5, 2010

Waiting for death to come.

Currently, I have several young patients that I am case managing. They are in the age range of 9 (yes, 9) to 53. All have been dealt a nasty hand with a nasty cancer. All are very sick with disease, but still quite functional.

All are waiting to die.

All have been given a time frame. And all have seen that time frame come and go.

I hate time frames. They are always wrong. Always.

The problem with time frames is that people start counting down the days. And they stop living. They just stop.

And they say goodbye and hug their friends and have tearful, heartrending talks and meet with their priests and some even pick out the music for their funeral. And then? They sit and wait.

And they waste a lot of precious living time.

It is a shame really. They just don't know what to do if they keep on living. And neither do their friends or loved ones.

So, they ask me. How much longer do I have? Why didn't I die yet? What is going on?

And I have little to say other than I just don't know and they are just going to have to keep living and so we move forward. Many times, reluctantly.

I wish MDs did not give patients a time frame. Some nurses do it as well and they are often wrong, too. I only can tell by my physical exam, but that is not to say that something catastrophic won't happen that causes sudden death. Like a clot or a hemorrhage or something else.

But I could say that about everyone I know.

So the point is to just keep living. Regardless of the hand you are dealt. And tell people every day that you love them and would miss them if they were not near you. Get that out of the way so that if you ever do get a bad diagnosis or are struck down while seemingly healthy, you will have no regrets. And the people in your life will be free from wondering how you really felt. It is a gift to them.

So give it often and freely.

My patients that have already said good-bye at what they interpreted as the end have many regrets. They regret doing it too soon and treating it like it was the last thing to say to friends and loved ones. Because now that are still alive, they don't know what to talk about anymore. So they avoid their friends and family. And they feel alone.

"So what do we do now? Do we just go back to the trivial," asked the wife of one of my patients.

Well, most times the trivial is the mainstay our lives. Laughing at a funny show, talking about work or school, asking what to have for dinner, picking out new furniture, watching sports. These trivial things are our lives. The "profound" really does not matter so much after all. We think it does, but a hug and a smile and a squeeze of the hand pretty much can sum it all up. And we can do that every day, even during commercial breaks while doing something as trivial as watching Dancing with the Stars.

So, just keep living. Don't worry so much about death or the end. It will come. It will. But life, life is all we know. And all that trivial nonsense we thought was a waste of time? It is as profound as anything else we could ever say or do.

So, my advice to my patients and their families is this; don't ever stop living. Keep doing what you love for as long as you can. Enjoy any moments that seem normal. Try not to look too often over your shoulder for the bad, it will come when it is ready. Laugh if you can. It is really okay. There will be many bad moments, but grasp any good ones that come along.

Feel free to be angry. Get really mad. You don't have to be strong.

This is hard.

Lean on friends for support. Allow them to help you. Call the nurse if you need help. We want to help, we do. You are not bothering us. Give us the burden of care so you can just be the wife, the husband, the sister, the brother, the child.

It is hard to wait for death. It is much harder than the fight to survive, even with the horrible treatments and side effects. At least you were moving forward. Death has its own time frame and follows no rules. The hardest part isn't letting go or fighting to live. The hardest part is waiting to die.

So, don't do it. Just keep living. Don't stop and wait for the end to come. Just try to keep moving forward. Listen to no one except the promptings of your own heart. It is the best and only reliable guide we have.

Sometimes even to live is an act of courage. ~Lucius Annaeus Seneca, Letters to Lucilius

Rejoice in the things that are present; all else is beyond thee. ~Montaigne

It is only possible to live happily-ever-after on a day-to-day basis. ~Margaret Bonnano

Yesterday is history. Tomorrow is a mystery. And today? Today is a gift. That's why we call it the present. ~Babatunde Olatunji