A couple of days ago I wrote about how hope has invaded my cancer story through the practice of capturing the now, authentic as it is, on a daily basis. Yesterday, in all of its authentic presence, I reflected on how sad I was with being stuck in a weakened and pained body. 

Such interesting contrasts in just 24 hours time…

And then I thought of something that I read recently in a book; a statement uttered by a character who was describing a significant loss in her life to another character in the book. A very fictional person saying something so very accurate to a very real me. 

“My despair disappeared. The grief remained,” Emilie Longpre said.

Can you relate? Have you wrestled with ‘get over it’ and ‘move on’? Have you wondered if something is wrong with you because you can’t? I imagine you’ve experienced a feeling of hopelessness at some point in your grief but, like me, have you felt stuck thinking that you can only regain hope when you’ve ‘completed’ grief? 

This phrase, among the thousands of other words in this random book among the millions of books that I have to choose from, stopped me in my tracks, bolded for emphasis if only for me. YES. This is precisely how I feel. I grieve much but with my despair gone, hope has room…not to cancel out my grief, but to hold it.

[Emilie Longpre is a character in A Fatal Grace by Louise Penny]

*Post 1002

Really? :: 12/28/17 :: Post 121

Today has been one of those days where I feel out of place…. where I cannot believe that I’m fighting cancer… where I look in the mirror and stare at my bald head wondering if this is really my reality. 

Really? Me? Cancer?

It is so strange that I’m several months into this part of my story and I’m literally FEELING the reality of cancer and yet I still sometimes sit in disbelief. I wonder why this happens. Why does acceptance wax and wane. Why is it fickle…

I hurt. All over. My chest muscles ache. My back and shoulders are tight. I have heartburn. Always. Nausea is almost constant. Sleeping is fitful and uncomfortable….in a chair or in my bed. My body can not regulate its own temperature. These hot flashes are dreadful…and then 5 minutes later I’m freezing. And shivering actually hurts me. I have no hair. And I have wigs. I have a port with a catheter in my jugular. And it changes how I move my body… putting on a jacket, stretching, moving my head, reaching for something…all have to be done differently so I don’t feel pain in my neck. And also done very carefully so I don’t dislodge anything. (I’m guessing that would be a bad thing considering I’m talking about my jugular………..). My left arm is numb. My chest is numb. I can push down on my tissue expanders and feel the plastic-y material give way and then “bounce back.” My sturnum hurts to touch. I am supposed to lose my eyebrows and eyelashes soon after round 5 infusion. I anticipate that being very difficult. I’m tired. All. Of. The. Time. 

I FEEL the reality. And yet I’m still in disbelief. 

Really? Me? Cancer?

Some Days :: 12/28/18 :: Post 472

Some days have more tears than others…

It’s been a heavy week. So much good. So much hard. 

Living Changed Head to Toe Day 28 :: 12/28/19 :: Post 836

I was getting ready for bed a few minutes ago and all I could think about was how terribly my feet were hurting, literally stabbing pains in my little toes. MY LITTLE TOES. …gosh I sound like a dreary broken record… To be fair, I did a crazy ton of stuff today – I 80% cleaned my room, 90% cleaned my bathroom and together with Chris and the girls, we 100% cleaned up Christmas (which means the rest of the house is 100% cleaned as well). I’m so grateful I am at a place where I can participate in the mundane because there was a time where I couldn’t even do that but sadly, every minute of it hurt and as I lay here, now, my body is a little extra angry. 

I guess that is living changed, head to TOE…learning how to just do life and do the mundane in the midst of constant pain. 

I find myself at an interesting intersection – there is so much behind me, so much new and never-before-lived experiences are now known…and what lies ahead is this concept of living changed head to toe as I navigate both the unknown and the mundane. I curiously anticipate how life will look as 2020, a whole new decade, begins. And I wonder what it will be like as I practice widening my focus while still living short.