2018 March 11: Hot and Cold

When it comes to my cancer treatments, the hardest periods for me are the "in-between" ones. One treatment has ended due to toxicity or tolerance but a new one hasn't yet begun - or even worse, a new course of action has yet to be decided. These are the minutes, hours, days, and weeks that really send me into deep distress. Each day is interminably long. I feel paralyzed by the lack of action, fearful of what's coming down the pipeline, and anxiety ridden over whether the new approach will work. I start to shut down and disconnect. "I just need a breather, time to process," I tell myself as I snuggle back into my bed instead of getting up to start my day. "I need to give myself a break," I say as I climb into a bubble bath and watch three episodes of "Friends" in a row. It's no big deal. I'll be back at it tomorrow. 

Life carries on - kids get to school, husband gets to work, our dogs skid around corners and bark at the delivery guys - but I'm not really participating much during these periods. I'm observing, maybe, but I'm not part of the fray. And, if I wait too long, if the dots aren't connected and a new plan delivered, if there isn't forward motion in the realm of my medical treatments, then increasingly I find that my breathing space has shifted from a shelter to a cage somehow, right beneath my feet. I hesitate, I hold my breath. Somehow, I can't return to the daily schedule; in the middle of everyone's action, now chilled and almost unmoving, is me. I'm frozen through, the icy core at the center of a whirling planet. I stop writing. I stop checking emails. That yoga class suddenly sounds difficult, not refreshing. I decide that I don't need to run to Target after all.

And then. The longer I stay there, out of step and out of time, the harder it becomes to step back in. So I continue to retreat. I realize, with little more than a raised eyebrow, that I haven't driven in a week. I can't remember, suddenly, when I last went out of doors. I stop returning texts. I put books down and pick nothing up. My mind just blanks. I sleep, and sleep some more. 

And then, for one reason or another - a doctor's appointment, a decision to start some new medicine, a beautiful morning in which I seize the side door and step outside and feel the cold concrete and the bright blue sky and the watercolor winter sun - I'm pushed back through the looking glass. And sure, I take a few minutes to dust myself off - I won't drive but I will go to the store; I walk to the library; I get in my car and make my way four blocks to the coffee shop. These are little victories, so small and unimportant, overlooked by most of the world. But not by me. 

It's easy to recede, to drift. It's hard to step back in. Especially when you've done it again and again and again and again. For months. For fucking YEARS. Which sounds antithetical, but maybe it's like magic: the more that you do it, the more energy it takes each time, the longer the recovery. Maybe it IS magic, now that I consider it. Or maybe I've been reading too many books. 

This is all a roundabout way of telling you where I've been. I've been nowhere. I've been right here, underneath a really soft blanket. I've been playing solitaire on my iPhone and not even checking my voicemails. I've been thinking, and dreaming, and getting myself together. I've been through the looking glass, but now I'm back.

The last scans I had showed some growth, which wasn't too terribly surprising. We decided to start back on a combination that I tried briefly in 2014: irinotecan and vectibix (last time, though, I did erbitux, which is almost the same thing). I had my first infusion a week ago last Thursday; my next infusion is in four days. So far, it's going okay. Irinotecan is known for giving patients belly trouble and lots of time in the bathroom. For whatever reason, that particular problem does not plague me, and so I'm very thankful. My hair hasn't started to fall out much yet, although I expect it will - a free hair thinning treatment, compliments of cancer! - and I'm denying it the chance by only washing my hair once a week, not using any hair products aside from shampoo and conditioners, and keeping it in a bun most of the time. This is not some special strategy or particularly strange for me; Denver living has always meant that I wash my hair infrequently (otherwise, it's just too dry - I actually put handfuls of hair oil into my hair on a regular basis). The no hair products ban is new, but as far as I can tell, all it's really doing is saving me money (and of course, hair, because now when I brush it, I'm not competing with some product induced stickiness or tangles). 

Meanwhile, the vectibix is giving me a reassuring little show: it gives some patients an acne-like rash that covers the face and neck, the décolletage - all those places where, you know, acne looks especially nice, especially when you're over the age of 40. It also makes all of your skin feel like it did back in the day, when sunscreen meant putting on baby oil and moms admonished you to apply the "heavy stuff" when you had a sunburn, which meant that you reluctantly rubbed some SPF 8 on your blistered shoulders and back when you arrived at the pool. Remember that dry, papery, fragile feeling that enveloped your skin? Remember the way it would burn a little and itch a lot? It feels exactly like that. The fun part of this particular medicine is that you WANT the rash. Some studies have shown that there's an actual correspondence between the onset of a significant rash and drug efficacy. So you sit around the first couple of weeks waiting for a rash that you then will immediately hate. And you'll wish you had started taking the antibiotic that was prescribed to help avoid the rash altogether - you'll wish you had taken that right away, but then again, maybe you don't because now you feel a little, at least, as though you have some proof that this regimen is working. So the rash makes you both irritated and cheerful, all at once. Just like most things in life, I guess. I also get mouth sores, and now that it's been 10 days since my first infusion, they have arrived in earnest. The idea of anything spicy, acidic - let's face it, anything interesting! - is suddenly and completely unappealing. I'm sure someone, somewhere, is paying good money to be hypnotized into thinking that food is unappealing, so perhaps I'll just play this one off like it's a spa treatment. Remind me of this the next time I complain, which will likely be later today, or perhaps tomorrow.

And on that note, I'm a little bit proud and a lot terrified to share that I'm going to the coffee shop now. Please don't make fun of me for my self-diagnosed but pretty sure it's real agoraphobia if you see me out and about, and don't stare at my splotchy, red, teenager-ish skin. Just smile and say something about the beautiful weather and how lucky we are to be alive right now. Because that's what I'll be thinking of, or trying to, as I pull myself back into the rhythms of my everyday life. 

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