The Invisible Side Effects

Just because you can’t see it, doesn’t mean it’s not there. I’m not talking about God. Or oxygen. Nope, I’m referring to the side effects of chemo.

This week marked the half way point in my chemotherapy treatments. And while there’s a part of me that finds joy in this milestone, I have to admit that mostly, I just feel like crap.

WARNING: Self-pity and wallowing to follow. If you’re not up for it, skip down to paragraph five!

True, the physical side effects of this regiment are so much more tolerable than the first round. There’s just a little peach fuzz left on my head now, barely visible unless you look really closely. My eyebrows and lashes have begun to disappear. I get sores in my mouth and the treatments leave me constipated, which lead to everlasting hemorrhoids. I also have a horrible metal taste in my mouth, so I’m alternately unable to eat and starving. And I have the beginning signs of neuropathy, where my fingers and toes feel like they’re falling asleep and on pins and needles. I am tired. All of the time. HOWEVER, I am able to complete many of my daily tasks, function in the world, and participate. So for that I’m grateful.

But I’ve realized that the physical side effects are only a part of what has been affecting my daily life. There is some serious stuff going on that’s problematic beyond the physical level. Stuff you wouldn’t see if you ran into me at the grocery store. It’s all about my psychological and emotional state. And it can be a bugger.

Ever taken steroids before? I hadn’t. I take a small dose the night before and morning of my treatments to help my body avoid a bad reaction to the chemo. I imagined steroids would make me feel the way I do on antihistamines…you know, that feeling like your blood is racing and you can’t calm it down? But nope, this is very different.

After I seemed to experience no obvious physical symptoms on my first doses of steroids, I thought I’d gotten by with a pass. I was energetic, even jovial. But steroids are a stealthy little devil.

I began noticing I wasn’t sleepy at bedtime. I’d fall asleep for maybe an hour and then be wide awake. But unlike bouts with insomnia, I wasn’t tired. I was alert and ready to keep going. I found myself creating all sorts of spreadsheets with end of year projections, cleaned up the contents on my computer, went through lots of pictures, all in the wee hours of the night. I’d do anything that was relatively quiet. Ok, that’s not so bad. I can deal.

Then I noticed how productive I was during the day. It was like I was working on hyper speed, ultra focused on the task at hand. I’d move from one thing to the next with great sufficiency. My house has never been so clean!

And then I noticed I was much more irritable than normal. I mean… MUCH more irritable. (In all fairness, it took two rounds of taking the steroids for me to notice the pattern. And although I was aware, this MAY have been pointed out to me by someone I love.) I overheard my husband, who’d taken my two boys aside. The conversation went something like this: “Boys, there’s a thing called Roid Rage and your Mommy is probably experiencing some of this, so it’s probably best to give her space for the couple days after her chemo treatment.” It reminded me of the old PMS days when my hormones would throw me into a state of ultra sensitivity to sound, taste, socks on the floor… you know, things that normally don’t put me over the edge.

But the part that has been hardest to deal with is the depression. I’m unsure if it’s the result of the steroids or the chemo drugs, but it is real. I get caught in some downward spirals that I have a hard time battling. And I’m triggered by things that, before I was highly medicated, wouldn’t have bothered me; like our financial situation, my choice to stay home with the boys (see Dark), or even being bald. Suddenly I find myself very self-conscious of the lack of hair on my head. I catch myself in the mirror and I’m stunned at how bald I am! Or I’ll be out in public and am suddenly mindful that I’ve got a scarf covering my bald head. In my right mind, I can get myself out of this type of negative self-talk, but these days it’s much more challenging.

I also find myself focusing on the negative much more than I did before. I’m impatient with friends and family. Intolerant of stupidity. (Well, ok, I was like that before.) And hyper sensitive. I feel lonely on a different level than before too. And there’s a part of me that just wants to be alone to avoid putting my bad mood, energy, stuff on the people around me.

Add to this my weakened physical state, and I have a sense that I’m always one step behind all the things I need to be doing, playing catch up a lot. I’m completing my ‘normal’ activities, getting the boys where they have to be, cooking meals, doing laundry, paying bills, homeschooling my younger son. But things like walking and exercising, that used to make me feel energized now leave me feeling depleted and weak.

Lack of sleep combined with my mental and physical state leaves me feeling unmotivated. To-do lists, which had been easy for me to prioritize and complete in the past, now sit stalled, swirling in my head (or on notes on my computer!). There’s a general fogginess that lingers and complicates clear thinking and it works in direct contrast to the steroids effects, leaving me feeling frustrated.

So on the outside I look normal. But it’s almost like I’m chasing my old life- trying to FORCE myself to be in a place that I just can’t sustain right now.

(My apologies to those who wanted to avoid the wallowing. It snuck in…)

Two weeks before I was diagnosed last March, we’d shared a big plan to take our boys to Disney World in May. The only vacations we’ve taken up until now involved meeting up with family, so this was a big deal. Unable to go then, we re-scheduled to November. But last week I realized that although I may appear to be doing ok, the truth is, I’m just not back to speed yet. The chemo is taking both visible and invisible tolls on me and I just can’t deny that any longer. Having to tell my boys that we would have to postpone this trip…again…nearly broke my heart.

It has been six months since diagnosis. A lot has changed. I’ve got eight more treatments, a surgery and many years of medication still ahead of me. Is it a wonder that I’m having challenges? Maybe it’s time for me to lighten up a bit? Perhaps I’ve set the bar a bit too high too soon? I’m so anxious to get my life back that I’m being a bit unrealistic, pushing myself too fast. When I was an actor, we called it ‘acting as if.’ But I can’t act my way through this one. And honestly, I really don’t want to. I’m too tired. Two more months of this seem insurmountable.

It occurs to me that perhaps I’m still coming to terms with this whole thing. Have I been in denial and this is another level of acceptance? I want to be very careful here because the truth is that I no longer have cancer. It has all been removed through surgery and these treatments are insurance to keep it away. But maybe this is an acceptance to the experience as a whole?

Friends ask how I’m doing and they share that I look good. I’m grateful to be looking healthy, for sure, but it’s not that simple really. It’s the invisible stuff affecting my experience that’s hard to articulate in a polite, concise manner. But I guess the gist is, this cancer stuff is still kicking my butt! And what you may not be seeing is that I am struggling. My body may look fine from the outside, but inside I’m fighting to stay vertical every day. Although the physical has improved, I am still drained and depleted and it takes a tremendous amount of energy to remain positive and functional.

So maybe I could be a little more patient with myself….

I look around and realize that so many people are struggling with their own challenges, both visible and invisible. I feel tremendous compassion and hope that my interactions may change someone’s experience for the better. I’m mindful to be kind to others because I just never really know what’s going on in someone else’s life. And I remind myself to extend the same courtesy to my own experience, as I try to be gentle, patient and kind to myself.

I know my situation is not that special. My challenge these days is just more concrete. But it IS temporary. It will end. And come June of next year, I hope to be in Disney World, celebrating my health, knowing that cancer has come and gone and I am back.

In loving,

Sarah