Living in an Undefined Space

So. I have Stage IV breast cancer. I am not going to get better. I am already experiencing pain and fatigue. Barring an act of God, I will most likely die within the next few years.

At the same time, I can still take care of myself. I cook (a bit), clean (a little), work (some). So far, I can manage most of my pain with prescription drugs that are non-narcotic. I can still ride my exercise bike, just not as much as I’d like. I can still laugh and I can still love.

It feels selfish when I want to talk to close friends about what are usually called “end-of-life issues”. It feels like self-indulgent drama-queenery to talk about my feelings about the cancer and about dying. I feel like a jerk when I have to cancel arrangements or can’t talk on the phone because I am not well enough. I feel like a selfish, entitled idiot when I find myself crying for no apparent reason. So many people are suffering more than you, I tell myself. Lose the drama. You don’t have it bad in the least!

I don’t pray for healing any more. I pray for God’s will to be done and for the grace to accept everything with peace and joy. It wasn’t a decision to start praying like that; it just happened. I haven’t stopped making plans, but the scale of my plans has contracted a little. The God I believe in does miracles, but by their very nature miracles are unusual. I’m not counting on one.

It’s an undefined space that I occupy now. It’s uncharted territory for me, and I don’t know how to conduct myself. I worry a lot about the people who love me. I pray for them all the time because I know that my dying and my death will be painful for them. I thank God that I am blessed with people who love me – so many people are deprived of that.

. . . . .

On a more practical note – tomorrow (yes, Sunday is a working day here) I go back to the neurologist to see about those holes in my skull (the venous lakes) and my more frequent and intense migraines. It’s a nice change to go to the doctor for something that can be treated.

You may also like...

18 Responses

  1. You are NOT a self-indulgent drama queen. Your thoughts and tears make perfect sense to me. You describe so eloquently the limbo land that is stage IV. It is an undefined and lonely place. I keep hearing this over and over. I can’t change much of that, but I can say I’m out here listening. I will not leave my stage IV friends in the shadows. Your voices will be heard if I have anything to say about it. And yes, it’s wonderful you have so many in your life who love you. Good luck tomorrow and keep writing.

  2. I am not in your same situation, but having been through cancer I found myself often saying I shouldn’t feel sorry for myself and that people are experiencing much worse. But, you DO have the right to say, “hey this just freaking sucks” and feel sad, angry, etc. about it. For you to be so positive in what must be a very trying and lonely situation is amazing. And you’re right, you can still laugh and still love, among other things. I agree wholeheartedly with Nancy – if nothing else, know that others are listening and not leaving you behind. Big hugs and peace to you.

  3. James says:

    It’s of how we would have no problem taking to friends about an emotional breakup, a divorce, the loss of a loved one but when our comes to ourselves somehow the rules are supposed to be different. This is one of the must challenging experiences anyone can go through – knowing that you will be dealing with illness from h here on out.

    • James says:

      They are probably only a few friends who can deal with the issue head-on with you and face it openly. They are golden. Add for the rest, if they think you are selfish for wanting to work through this process candidly, they might be the ones you have to leave by the roadside as you continue this journey. At this time, of all times, you need someone who will honor your feelings and respect you no matter what comes up.

  4. debby3768 says:

    I think that end of life is uncharted territory for everyone. I can understand the tears and concerns and the need to talk, and mostly, what I hope is that the people in your life understand it as well.

  5. I think needing to talk about dying is a phase we go through in our “pre-grieving”. I lost a lot of social friends during that time. Thank you for what you express. It rings so true with my own experiences with metastatic cancer.

  6. Maxine D says:

    I cannot fully understand what you are going through, but I can understand the need to talk about it – you are not a Drama queen ( you haven’t seen my 2 yr old DGD!!) but simply someone who needs to talk, and who needs people to listen, if nothing else, but preferably engage with you when you do.
    Yes ;life appears to be winding down and you are limited in your activities and strength, but you are still alive and still need the support of others, as we all do!.
    Prayers and Blessings

  7. Lisa says:

    The valley of the shadow of death is a lonely place. It helps when others are willing to walk with us there a while. I think it will help them to accept it when you are home. The times when you feel alone reach for the rod and staff and for the one who carries them. He is there with you, and this is the road home. I will be praying that The Father will encourage one of your close friends to listen to you when you need to talk, and hand you a tissue when you need to cry.

  8. Knot Telling says:

    Thank you for the kind words, everyone.

    Nancy, funny you say “limbo land”. When I was drafting this post the working title was “Limbo”.

    Kicking Cancer, positive? Really? I thought this was kind of a negative post. Glad it doesn’t come off that way after all.

    James, what can say with everything you have going on? You are a golden friend.

    Debby, you’re right. This is common ground for humankind. I guess what I’m trying to say is that it’s strange when it’s so early and so protracted.

    Dirty Pink, I see from your blog that you are a three year resident of this country called Mets. I’m so sorry about your pain and other discomfort.

    Maxine, thanks for the great laugh! I think that two- and three-year-olds set the bar for drama-queenery at a level to which the rest of us can but aspire!

    Lisa, You have giving me food for my meditation today. The valley of the shadow of death… sounds like there are three places to pass through, doesn’t it? I’m going to be considering that. Thank you.

  9. Tim says:

    I thought this was quite the opposite of drama-queenery. I keep trying to write a comment but everything sounds trite – so I’ll just say I do so wish you the very best.

  10. Terry says:

    Know you are loved and respected and thanks for being present in so many ways.

  11. Knot Telling says:

    Tim, It’s hard to speak truths without feeling trite. I feel the same way when I write posts like these. You’re comment isn’t trite and I appreciate it – and your friendship – very much.

    Terry, thank you for your words and helpful feedback over the years.

  12. YAPCaB says:

    The great thing about blogs is all the people who are listening to you, who want to listen to you. We want you to say anything that helps you or makes you feel better. We never feel put upon or taken advantage of. There’s never a reason to apologize. Just keep writing. We’re listening.

  13. Knot Telling says:

    Hello, YAPCaB, and welcome to Telling Knots! I hope you find some of the posts interesting.

    Thanks for your kind words. Isn’t it wonderful to meet all sorts of people by blogging? Many people who read TK are friends of mine but I’m meeting so many new and very supportive people, too.

    I’m following your blog now and look forward to reading the thoughts of another member of the Stage IV Club.

  1. 10 September, 2012

    […] was reading a fellow blogger’s post today that captures this feeling really well.  In “Living in an Undefined Space,” the author of Telling Knots, explores how living with this diagnosis results in a […]

  2. 15 September, 2012

    […] 7. Telling Knots.  This blogger uses a lace making metaphor to explain life: “Sometimes elaborate and complex, sometimes an easily understood progression from here to over there.”  Succinct and thoughtful, this blog really does help me cope with the fear an uncertainty that comes with metastatic breast cancer.  Check out my favorite post: “Living in an Undefined Space.” […]

  3. 2 June, 2013

    […] a very real sense, I am Living in an Undefined Space. I often say I am living with cancer, but cancer does not play well with others and is not a good […]

  4. 12 August, 2013

    […] attend, a fact of life, the next step. I’ve written several posts about it. My favorites are Living in an Undefined Space, It’s not death, it’s the dying, and One Advantage of […]

Leave a Reply

Your email address will not be published. Required fields are marked *

%d bloggers like this: