And for the past thirteen years, I have lived with a rare incurable yet highly treatable blood cancer called Waldenstrӧm macroglobulinemia. How do I live in the shadow of incurability?

- by Lisa W
from USA


Lisa W:  Hi.  I’m Lisa Wise.  And for the past thirteen years, I have lived with a rare incurable yet highly treatable blood cancer called Waldenstrom Macroglobulinemia.

I am sitting in the middle of this creek balanced between two rocks because I have a question about balance.

My question is, how do I live in the shadow of incurability?  Meaning, how do I live with the knowledge of my cancer together with my desire to live a meaningful, rich, joyful life that is full of hope.

I really appreciate you taking the time to answer my question and I can’t wait to hear your response.

Julie Larson:  Hello, Lisa.  I am so glad that you have brought this question to us today because you are not alone.  And there are so many survivors living similar to you, navigating that tricky balance between uncertainty and fear and overwhelm, and a great desire to stay present and stay grounded and connected to all that matters so much to them.

So let’s just think about this exactly in that way, in the way of balance, and be honest about the fact that it is very possible to have two conflicting feelings and the thoughts that fuel those feelings at the same time. And your efforts in listening closely to yourself and making choices about where you put your attention and your energy each day, are living right in that decision-making of balance.  There are days and times when fear and worry walk through the door and you need to cut yourself a break.  And you need to lower your expectations.  And you need to give yourself permission to take it easy, to be quiet, to withdraw, to constrict and to huddle in and just simply and quietly allow time and space for the sadness and the fear that is normal and very understandable to have.  And sometimes it makes sense to not white knuckle it through and not just keep pushing, but to give ourselves compassion and time because the reality is the circumstances that we find ourselves in are unexpected.

And not exactly the way we’d hoped.  And that can be upsetting and unsettling.  But then at the same time, we don’t want to set up camp and live there, right?  You have just spoken deeply about how much you have a passion and an interest to stay connected to the here and the now and all that you want your big life to be.  So, on the other side of balance and compassion is discipline.  And discipline means that there are times when we check in with ourselves and we say, you know what?

I have been kind of laying low and flat for a while now, and that’s not helping.  It’s not working for me in the way that it did initially.  And I have got to get in the shower, and I have got to put on my makeup, and I’ve got to get outside, and I’ve got to reach and call a friend.  And maybe I need to shift my attention and my focus to someone outside of my worry, someone outside of all of this uncertainty, because I need help getting somewhere else.

And so we move our attention and our energy to focusing on something and someone else.  And the real work of living in this is that there is no manual and there is no prescription to this.  But it’s about cultivating a habit of checking in.  Where am I today?  Is today one of those days when I need to take it easy and be gentle?  Or is today one of those days when I need to be honest?

And I need to change and focus my attention outside of this worry.  It’s not easy.  It’s work.  But I promise that over time you grow those muscles, and you get better at better of listening and being intentional.  Thinking of you, wishing you well.  And thank you for asking this question today.

- by Julie Larson, LCSW
from Des Moines, IA
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