23. Demon-Wrestling

This week I’ve been wrestling demons whose names are exhaustion, fear and sadness.  Each on their own are quite manageable, but it’s their teaming up to beat my ass to a pulp this week that’s been hard to take.  I know that writing about it will help, or at least help me gain perspective.

I have been incredibly tired with the cumulative effect of radiation.  The day after the completion of that treatment, I had my Cyramza infusion with the Benadryl that knocked me on my bum.  I’ve previously shared that when my fatigue gets to a certain level, it couples with what feels like an infinite sadness.  Mellon Collie, anyone?  It’s a pattern that I’m addressing, and is a work in progress.  I’m making some headway, just not fast enough for my liking!

What’s sent me over the edge is that I’ve also been fretting.  Enter fear, to make the perfect trifecta.  I’ve been overly consumed with new twinges of pain in my abdomen, and thoughts have crept in about the progression of the cancer, perhaps shortening the runway that I’ve been working so damn hard to positively affect.  My goal here is to share it openly in the hopes of shining a light on this ball of fear and casting it right into the shadows.  Noble perhaps, but know that it’s not about honesty or vulnerability, it’s about survival.  I don’t feel that I have a choice but to share.  I simply can’t hold it in, nor do I want to.

When I feel fear on top of being tired and sad, it feels like the world’s closing in.  I have no energy to meet it head on and seemingly no resources to rely on.  The fear of running out of time spurs the hangwringing -- you don’t have the energy to do anything, but your mind won’t let you rest.  The hamster is sprinting on the wheel, when she just needs to get off, have a snack and take a nap.

Before diagnosis when needing to take the edge of, sometimes I’d ask hubby to make me a strong Manhattan, which usually worked like a charm.  And now with holes in my liver, that last holdout is now unavailable and I’m left with… me.

What has arisen is a fundamental conflict between mind and body, we’re not on the same page and it doesn’t even feel like the same book.  My mind intuitively knows that I’m going to be fine.  That I will prevail and be the 1%, and why not me?  And my body is telling me, “Cass, we’re very scared and angry.  The tank is on empty.  We’ve been doing all the right things and still this might not go our way.  In spite of everything, we could still succumb and that is so very unfair."  Injustice spurs anger, at least for my sister and I.  Injustice in a framework of dispiritedness.

When consumed with these feelings, I have a hard time seeing my way clear.  And here’s the kicker, with all my mindfulness training, I know that this is indeed temporary.  That I will once again, probably in fairly short order, feel optimistic and able to experience joy.  It’s been hard to find reasons to belly laugh when the mere act of it triggers that twingy pain that’s got you all tied up in knots to begin with.  That you want to live so badly, to be cancer-free and go back to your old life and never again take it for granted.  Why can’t I just allow this to be what it is, and make space for that?  Aren’t I the one that keeps saying that I need to make room for all of it?  It feels a bit hypocritical.

On Wednesday, I was teary when my acupuncturist asked me how I was doing.  When I told her about feeling ungrounded and lacking resilience, she had this analogy for me: It’s like I’m running a 100 mile ultramarathon and I’m at mile 98.  I’ve already run through the desert and over steep hills.  And still the race relentlessly goes on.  I’ve been rained on, at times have been very cold and very hot, and now am bone-tired.  Yet, look how far I’ve come.  She encouraged me to put down the story and the schedule, to rest my mind while doing what I can.  I promised to try.  I feel like a petulant three-year-old and hate this stupid race right now.

Perhaps all this was spurred on by the reminder of life without my mother, and her experience with cancer in the context of my direct experience with it.  Perhaps it was the culmination of all those anniversaries in the last six weeks with radiation overlaying it all.  More likely is that I’m almost at my one-year anniversary since diagnosis, so very far away from where I’d like to be.  I don’t particularly care how or why, I just want to dissolve it.  When in the moment of feeling so distraught, what the answer is.  Do you know?

So, I’ve done the only things I know how to do.  To be completely honest about my raw feelings with the fill-in oncologist, who wanted to move the date up of my next scan when I described what I felt was going on.  I asked for an abdominal exam, and while she said she could feel something, there’s no way to know if it’s different than what was already there, but that she couldn’t feel anything like the big thing I had gotten myself so worked up over.  I felt angry that I needed her opinion to be able to put down some of my anxiety.  I want to be able to do that for myself.

The only other thing seemingly in my power is to get sleep the only way I can… with medication (prescribed and recreational), like when I was first diagnosed.  In the few days since getting more sleep, I have hints of optimism and have realized that I need to deal with the exhaustion first before being ready for fear or sadness.  And of course, to have the patience to wait until I have the results of the scans at the end of this week.  Sometimes that’s easier when you’re looking at the back of your eyelids.

Because I hate leaving things without some positively to look towards, here’s some moments of joy before you depart.  Right after my acupuncture and chiropractic appointments, I was hit with an intense urge to eat a cheeseburger with sweet potato fries, to take a break from “the right,” and celebrate the end of radiation.  So, Dave and I did just that, topping it off with a shared chocolate milkshake.  And, in that moment I felt happy and relaxed, and so fortunate to have a loving partner who was not only so quick to join me in my celebration, but also found where we should eat and chauffeured me there.

I’ll keep you posted on the rest.