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


  1. This post should go viral. Truly excellent observations. Thanks to Jody for sharing on Twitter and Facebook.

    IF, not when.... My mom is the mets patients, I'm the "survivor" living the IF part. I'm pulling my mom to the IF side of the fence, too.

    Thank you for such wise words.


    1. May I please second that vote? I've shared it with my networks. We need IF in the consultation room. What's the point, otherwise? ~Catherine

  2. AnneMarie. Glad you're there to pull your mom to the If side of the fence. :-)

  3. Sometimes, perspective is everything, isn't it? Thanks for writing this. Shared. No matter which side of NED/not-NED or if/when we are on, we all need to know this. xoxo


  4. YES. This is EXACTLY how I feel. And now, to inform my oncologist about this revolutionary word: "if"


  5. I found you via Catherine Brunelle and #bcsm. This speaks to me 100%. The "when" is crushing in a way that you only get if you live with metastatic cancer. I was diagnosed with bc in Jan 2006, liver mets in November 2006 and NED by July 2007. I'm her2+ and was on Herceptin + navelbine then just Herceptin. Last fall, just when I was getting complacent, I was diagnosed with a brain tumour. I'm back in the land of NED and trying to train myself to think "if" - it's a struggle. Thanks so much for sharing this.

  6. 4 years into MBC, all over my bones, fracturing, threatening to break, I still find it better for me to be prepared with "WHEN" thinking. I think before MBC, I was able to live with "IF", but now "IF" feels like fantasy land...IF a cure comes tomorrow, IF a cure comes in my lifetime, IF I live another 20-30 yrs, IF Santa Claus and the Easter Bunny are real...

    I must be realistic and prepared. That means saying "WHEN".

    You've really started something here! Good topic!

  7. Good point, Dirty Pink Underbelly. And at the same time, there is always another worse place to be. The challenge for me is to not live in that worse place, but to stay in the moment as it is. I tend to go to the next worse place, rather than staying where I am. And when I do that, it makes it harder for me to deal with what is happening right now, I become so frozen in fear.

  8. Gosh, this is a fabulous post, though of course as Dirty Pink Underbelly pointed out, this 'if' way of dealing with things isn't the approach that works for everyone either. But I say if it does work for you, go for it! And I completely agree about how words carry a lot of weight, especially the words of oncologists!