Monday, August 26, 2013

If, Not When

I'm going to knock on wood before I post this (really).  That's what I do. I knock on wood.  I comment that I don't believe in God, but I do believe in knocking on wood. By that I mean that I do not believe God does stuff to us, gives us cancer or takes it away.  I wasn't given this. I got this.  But for some reason, knocking on wood just makes me feel better.

I do want to talk about the concept of "If, not when."  So I'm going to knock on some wood before I type this to keep the evil eye of cancer away.  Wouldn't it suck for me to say that I'm doing well, and then the cancer came back?  Knocking on wood here.

So back to if, not when.  When I visit my oncologist, her patter includes the concept of "when the treatment stops working."  Now I understand that her experience has been that her metastatic breast cancer patients' cancer eventually learns the treatment and then the cancer progresses. But it wasn't until recently that I realized how her constant talk of "when" was affecting me. It was bumming me out.

The Land of When has me thinking ahead to the day when the cancer will progress, how that will result in my disability, my job loss, my eventual pain-filled death.  In the Land of When, I am afraid to make plans, I wake up in the middle-of-the-night in a panic, and I watch and wait in fear.  And I am tired of living in the Land of When.

Sadly, I don't think doctors realize how much what they say affects a patient.  People literally live and die on a doctor's word, demeanor, approach.  My oncologist certainly does not mean to harm. Instead, I think she is trying to help.  I often joke that she is like the parent who doesn't want her child to be disappointed. "Honey," she says in the mode of an overprotective parent,"I know you really like that boy. But he might not like you, so don't get your hopes up."

But my question is what is wrong with getting my hopes up? What is wrong with expecting the unexpected?  What if I'm that very rare patient whose cancer doesn't progress?  What if 10 years from now, I am still taking Herceptin and the cancer has remained in check? (Knock on wood.)  And what if I live those 10 years in constant fear and panic?

That would suck.

I don't want live in the Land of When.  That's like living in Purgatory, and I hear from the Catholics that that's not a pleasant place.  I want to live in the Land of If instead. A land where the question is, if the cancer progresses?  If I am disabled? If.

That's the land that most people live in. Most people don't go through the day thinking, I will be disabled, I will be in pain, I will suffer.   What can it hurt for me to live in the Land of If too? I might be disappointed if the cancer progresses?

I'd rather experience disappointment if the cancer progresses, than to experience  that disappointment every day of my life.  Even if I only live 30 more days, living in the Land of If sounds much more pleasant than living in fear.

So screw the Land of When. Screw the Land of Fear. Screw the Land of Pain. I refuse to live there any more.  I'm moving over to the Land of If.  Packing the truck and knocking on wood right now. If. If. If. If.

Damnit. If.  I'm moved.

Now to tell my overprotective oncologist.

Also published on CureToday

Friday, August 9, 2013

Job's Friends

I've always disliked the Book of Job. The idea of God laying a bet with Satan to test the strength of Job's faith by hurting him and taking everything away that he loves is a disturbing idea, to say the least.

But there is one important message I heard in reading the story, and that is the reaction of Job's friends.  Job's life is being whittled away bit by bit.  He has lost his crops, his livestock, his family.  He is truly aggrieved.  Job's friends live a distance from him, but they come together and decide to go to Job in order to help him mourn.  For the first seven days, they merely sit with him, quietly.  They do not say a word.  They support him, let him have his sadness, be there with him in his time of trial.

But finally they speak. And what they say to him is that it is his fault, he has sinned.  He deserved what he got.  And then they give him advice.  And they do not stop giving him advice. For pages and pages they give him advice.  And even when Job tells his friends that they are "miserable comforters," they still will not shut up.

Want to know my favorite part of the Book of Job?  After pages and pages and pages of advice giving, God finally speaks from a whirlwind, and  basically says to Job's friends, "Who are you to talk?"  And then he tells them to shut up.  Best moment ever.

What impressed me in the story was the seven days his friends sat with Job and comforted him.  I know I've been guilty of wanting to fix things for a friend, giving advice instead of comfort. But really, the most valuable thing a friend can provide is quiet and steady support.

And that's what I've learned to value.  My friend Lisa who offers to come over and keep me company. My friends Deborah and Carole who would drop off delicious food on my porch. My friends Emmy, Jo Ann, and Sheila who came with me to doctor appointments.  My friend Ann who would send books and little surprises through the mail. My Aunt Carole and Uncle Mike who came with me to chemo and took care of me after my surgery. My nephews Josh and Ben and my sister Meg who came to DC several times to help me maintain my house and just keep me company.  My cousins Diana and Bob who drove down from Pennsylvania, in spite of troubles of their own, to tend my garden and fix a few things. And many, many more people who did  many, many more things.

These are the actions that matter. This is a friend.

As Henri J.M. Nouwen so aptly stated, “When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares."

The lesson of the Book of Job?  Mourn with a friend, sit with a friend, and shut the heck up.  That's a lesson I sure need to remember.  I'll shut up now. I'll be here for you when you need me.