It’s been over a month since I have last updated you all (wow!)
So, what all have I been doing?
It honestly feels like I’ve been tethering between living and resting-fatigue, that swinging pendulum that I still quite can’t get figured out. After almost 4 months on this new treatment, this new chemo schedule, you’d think I would get the hang out this now, know when the swings of energy are coming and when the lows are bringing me back to my bed to rest, rest.
After almost 13 years of this on-and-off again cancer and chemo life, you’d think I’d get the hang of this. Yet sometimes, I feel like I’m barely hanging on.
I know, I know. My doctors remind me that the more chemotherapy I get over the years, the more it takes time to recover. My body doesn’t train to get through the chemotherapy, like a marathon runner, but instead it gets more drained rather than trained. You think I would realize and remember this by now that I’m literally letting poison slip into my veins, drugs that label themselves boldly that they are cytotoxic, toxic to life-giving cells. Ha, yes, if you need any definition of poison, that is poison indeed. And yet, even with this knowledge and these facts, I still think I can keep up and “do better than last time.” Its like I am comparing my runner strides after every round, seeing if I can beat my time from last time, but its a guarantee that I can’t. And as my body is getting older plus the amount of poison-chemo it’s had, I’m definitely not set up very well for this marathon once again.
These last few chemo cycle-laps though have added new survivor-runners next to me: Ashleigh and Daniel. Now Monday treatment days have neighboring friends in the hall who are also doing the same chemotherapy as me. And though we definitely don’t wish these new relapses on one another at all, I know I am grateful to have them there next to me, to lay next to Ashleigh in her hospital bed as she shows me videos on her phone and to listen to Daniel talk about his latest projects on cars and motorcycles; our conversations transport us to somewhere else that is far away from the hospital rooms we are currently held hostage in. And we are freely laughing at cancer jokes and discussing and comparing side effects, wondering alongside each other what is going on inside our bodies.
I swear, the laughter and the talks we have, from looking at us on the outside, you would never know that we are “sick,” that we have cancer, but instead we are healthy young adults trying to work and figure out life. And indeed we are trying to figure out life; we just have literal hurdles of cancer relapses to jump over in our life-marathon course, and we have to take some more breaks here and there from time to time in order to rest.
I’ve been resting more these past few weeks, barely making it through a half day at work anymore. The tiredness is unreal. My journal entries of April capture the swinging pendulum of energy-fatigue that my mind and body are forcibly knocked into—
prayer journal entry: april 4 2017
It’s so easy some days to just sleep and read all day. Or watch tv. Or just watch life go by.
I prefer to listen to life. I close my eyes because its too hard at times to keep them open. I am not choosing to be blind, but my ears are interacting with the world for me and my mental dialogue as well. Is that enough?
Is that enough?
It’s not enough after each day when I am aching and wishing that I had done more with my day, chastising myself to do more, why didn’t you do more, you could have been more productive. I know this is not the positive or encouraging mental soundtrack that should I be listening to, and yet it is what I listen to.
I hate looking at time and knowing what time it is. If its too late in the day, I feel lazy. I begin to mentally track all the things I’ve done as well as the omissive things that have not done. I call myself lazy because I know that I can do more, be more, that I have he capacity for so much life, for so much living and yet I don’t and squander my energy.
prayer journal entry: april 7 2017
I’ve been taking to reading fiction rather than living life. I go to the bookstore or the library at least once a week, collecting stories as if I’m picking wildflowers by the bushel. Look down at my bundle, and I wish I could read-experience them all at once. Going down aisle after aisle, I wish I could magically touch each book binding and be transported somewhere else, somewhere at least with more energy.
I don’t have much energy to life live, so I read. And even then at times I wish I knew Braille so I could touch-read and experience, feel and connect the dots and understand. My eyes these days hate to even stay open, and it seems that they are resorting to depending on my other senses: taste, touch, smell, hearing, dreaming.
My mind dreams so it can live. It dreams of the simple, the everyday: driving my Volvo, going to the library, running errands at Target, cooking new dishes, grocery shopping. My mind dreams of these things and puts me right there in those places and spaces, and its as if I’m living and yet my mind is simply masterful when it comes to the theatre.
I read to take in; I write to give out. I desperately search for the words that I can hold onto, to sustain me and repeat as my mind’s mantra so that I can be free and live. I claw at words; I hold tightly to them, almost to choke them out it seems. There are so many words that I want to desperately hold onto, sentences like a bridge-ladder to help me climb outside of myself, my pit and onto safety-sanity.
I have always worshiped words and their power since my youth. My mother tells me that I’ve always been fascinated by words. She remembers me, young toddler Jenna, my index finger pointing and underlining the rows on rows of words in my small, baby pink bible, desperately wanting to read and understand the words/the Word.
I’ve always had desire for words, the Word , it turns out.
And maybe one day she’ll be reading my words in a book, understanding more of what my mouth can barely say at times because I know of the agony it would cause her.
prayer journal entry: april 11 2017
a meditation on 2 cor 4, on breaking.
I want to be available,
but all I am is availably broken.
And yet, somehow, that is what You want, You desire: brokenness. My energy-gas gage is broken; I can’t fully tell when I have energy compared to when I just need some food or sleep or both or when I just simply need to push myself, my body and not think of its limits, this body fencing me in with its white-bone fence and tendons for wiring.
You can be trapped in your own body. Your own flesh and blood can harden, mummify against your skin, trapping soul and spirit against their will. Is there ever a way out? Only from the outside can you seek refuge and strength, Someone Else who is stronger and greater than you and your weak-ability-spirit within you. Only He can begin to strip and unravel you, let the casing finally breathe. The cracks are coming, are noticeable to all and not just you.
It’s all you really wanted to do anyways—break free from this paper mache mess and handcuffs. They seem so simple and silly and powerless now looking back at the broken paperchains but in the moment they seemed like weights so strong, so dense on your spirit. Its really what you wanted al along—this deeper freedom and yet all you did was lay there—not lay there and ask. All you needed were those 3 letters, that small word—ask—ask in prayer, and freedom could have come so much quickly.
We desperately need help.
We need help asking for help.
Its only until you ask that you finally see that to your core about yourself and you can be amazed by the negative strength on your own stubbornness, strength that weighs you down and makes paper into lead-lies that hold you down
I could keep going with journal entries, but I begin to notice my own pattern of lamenting and need to stop. Because truly, here have been some amazing days of life and energy in between all of those lamenting prayers that I need to remember and be thankful for. From getting to watch and celebrate a dear friend’s wedding, picking up a new hobby of gardening, getting to catch up with an old friend more regularly, working with new students at my job, laughing at my roommates and the silly things they say…there are the simple moments where I do get to enjoy life and my mind and body forget that I am dealing with cancer, that it seems so very distant.
Help me to enjoy those moments and be there for more of those moments, Father.
Help me to push myself when appropriate to be around those moments, those people, the love that you have given me.
Help me to grateful and see life as living for You, and not a productivity check-list to mark and cross off.
Help me to rest, to rest in You.
Thank you friends for always listening to my rantings and ramblings and for praying for me continuously!