A Different Wholeness

Recently, as I was going through my stash of old sheet music looking for inspiration and something interesting to use in the creation of one of my assemblage angels, I came across a piece with the words “con fermezza” – an instruction to the musician to “play with firmness.”

For some reason this idea appealed to me. Lately I’ve been trying to see this leg of my journey with cancer as an opportunity to recreate my life more artistically than ever. An artist I admire named Keri Smith says in her book Living Out Loud: Activities to Fuel a Creative Life that “play is the most important element in discovering who you are.” So I’ve started working on playing more…and in my case, since play hasn’t ever been my strong suit, I think I need to practice with firmness!

Con Fermezza Angel

In continuing my regimen of taking chemo these past few months, I realize I haven’t particularly wanted to accept the myriad side effects as they are building. I seem to have created this idea in my mind that I’d be able to “breeze through” this round of Xeloda. But odd things keep developing that I can no longer ignore. So I took this list of things with me to talk about with my oncologist at our last appointment:

• The “hand and foot syndrome” is getting worse. The skin on my palms and soles is much redder, the tissue has very little elasticity now, and my fingers ache all the time.
• Moles, freckles and age spots – call them what you like – are cropping up on my hands, feet, and face at an alarming rate now. I’m especially aware of new ones on my nose and above my lip (creating a nice shadow effect that makes it look like I have a faint mustache!)
• My vision is changing. It’s become uncomfortable to wear my contact lenses. My eyes simply burn sometimes, and I occasionally see “floaters” and spots.
• About a half hour after I take the pills, I have a lot of abdominal discomfort. I generally have to lie down for a while until the pain passes (which it usually does within a short time).
• I’m rarely able to sleep through the night. I fall asleep just fine, but awaken in the middle of the night and have trouble getting back to sleep.
• I get tired a lot. The fatigue comes on quickly, like hitting a wall. I’m seemingly fine one moment and the next I’m not.
• I only want to eat sweets – nothing else tastes very good or holds much interest for me. I have little enthusiasm for food (except for cakes and breads and pies and chocolate).

To each of my complaints, Dr. Fekrazad gave nearly the same answer: “Yes, that’s from the Xeloda. And it’s probably going to get a bit worse.”  Oh, joy.

But here’s what he said that I could appreciate: He described his role as similar to that of a parent who takes their child in for a nasty shot. The child is crying and screaming from both fear and pain.  The parent knows it’s awful for the child, but also knows it’s for their benefit. They don’t like inflicting pain on their baby, but under the circumstances it’s what they feel they have to do.  Con fermezza.

Then Dr. Fekrazad actually said these words: “I know I’m poisoning you. I know it’s difficult.” He also said that while he strongly recommended I stay on the chemo until July, if the time came when I knew in my heart I couldn’t tolerate it any longer, he would agree to stopping the treatment early. He said he trusted my intuition about when “enough was enough” and that he would support me if I made the call to quit before the six months was up.

So, I’ve done a little more self examination (does it ever end?) and decided that maybe I can approach this part of the journey in the same fashion as my creativity. Play with firmness! Think of this whole chemo treatment reality as just a game – laugh at my freckle mustache, get a pair of quirky horn-rimmed glasses, wear gloves all the time (like it’s Hollywood or something), live in pajamas and sleep during the day when I have to, enjoy being up at night when the world is all quiet and there’s nothing to distract me from playing. And eat cake.

Con fermezza.