Month: February 2018

Crushing it a little bit

Last chemo cycle was my best one yet. The first week wasn’t spent at the bottom of the pit of inconsolable despair and hopelessness; mostly I just floated around at the top of said pit, which is much more tolerable. My love and I made an extra effort to keep me active this time around: more walks, seeing live music, connecting with friends. It seemed to really help.

The main physical side effect of this chemo cocktail is fatigue. And while the fatigue is extreme enough that I could justify staying in bed all day, the only thing that really has an impact on chemo fatigue is physical activity. So I’m working on that.

I’m struck by the difference between what I can do in my first week of my chemo cycle versus the second. During my first week, I walked three blocks to a restaurant, sat for an hour to eat, walked back home and needed to nap for two hours. The next week, I walked to a restaurant more than a mile away, with no nap needed when I got home.

During my first week, my physical therapist noted that my gait had really declined—I was high-knee walking because my lower legs felt extra heavy. The next week, I aced my physical therapy progress tests and managed to take my first shower standing up, without a bench.

I struggle to not judge myself during week one, to accept my limitations as part of the new rythym of my life. To remember how good week two is. It’s a practice. It’s definitely easier said than done. Especially when I sit back and realize that, best-case scenario, this will be the cadence for a long time coming.

My oncologist is loathe to give me another “chemo holiday” since my last one ended with a hemorrhaging brain tumor and metastasis to my lungs and bones. So this every-two-week chemo cycle will continue until the chemo stops working, or I can’t tolerate the toxicity.

I’ll be honest, despite my gratitude for treatment that is keeping me alive, I resent my situation. Despite my happiness for people with earlier-stage cancers finishing their treatments and being declared “cancer free”—and believe me, I am overjoyed every time—I can’t help but feel a pang, that my port will never be removed, that I’ll be getting brain MRIs and full-body CT scans every other month for forever, that I may be on chemo for the rest of my life.

But, who really knows the future, right? Last time I saw my oncologist, she mentioned I might be eligible for immunotherapy. Last time I made pancakes from a mix I messed it up and became convinced that it meant something, that maybe my itty bitty brain tumors are waking up. Last time I was on chemo I couldn’t touch things in the refrigerator because of cold sensitivity. This time ice cream is consumed almost daily, as it should be.

“I go on and on and on and on.”–Erykah Badu

The thing about my left thumb

There’s a lot about chemo that’s obvious: It’s hard. There will be nausea. Your hair might fall out.

But there are all these little things that they don’t really warn you about, no matter how long a list of side effects and treatments they may give you.

For example, nail shape changes. Last time I was on chemo, I thought I was losing my mind a little bit because the nails of my big toes were becoming ingrown and it just seemed so weird. They didn’t quite look right. But then again, I don’t spend a ton of time staring at my feet.

But this time on chemo, my fingernails are completely changed. Apparently this is a thing. I don’t like it.

Looking at my hands has become a constant reminder that my life will never be the same again. Like I needed that nudge. Maybe I’ll be on chemo for the rest of my life. Maybe my left thumbnail will always look like a stranger’s oddly rectangular nail. It certainly doesn’t look like it belongs on my hand.

The nurse practitioner in the infusion center tells me that people tolerate my current chemo cocktail better than my last one. With the last chemo, they push to get people to twelve treatments. With this one, I guess one could go on indefinitely.

This doesn’t make me feel better. I think it’s supposed to.

Other things that don’t make me feel better: Setting intentions for 2018. Being told how to feel. Anything posted to NextDoor.

Things that do make me feel better, if only sometimes: Ice cream. My beloved reading to me at night. Meditating. Connecting with friends.