This was how my life was before. Before getting cancer for the third time. Before going back to work for about five minutes before cancer struck again. Before getting cancer for the second time. I used to make myself a list the night before of things to do the next day. Sometimes I would even figure out what time blocks I’d use and put things in chronological order.
Even with a list I still probably only got 35% of each list done each day. I didn’t know steroids could help with that. When I was high on Decadron, I never dropped a single ball. And I never made lists. Everything was clear in my head. laid out, almost a choreography of what needed to happen when. Do I miss that? Do I miss not letting things slip? Maybe a little. But I don’t miss it enough to go back to sleepless nights (or knockout drugs for sleep), or the manic, uncharacteristic gregariousness that I couldn’t control if I wanted to. Now, when I ride the subway, I’m no longer worried I’m going to talk to strangers. I’m not worried about starting conversations with people I usually avoid.
Last night was my most successful night of sleep since kicking the nightly Ativan habit. I did wake up at 5 a.m., but somehow coaxed myself back asleep. I think it was putting the pillow over my face to block the light that helped. Why is it so light out at 5 a.m.? Who needs that? And why do the birds have to make such a racket then? Some respect, please, birds. Sleep is still very hard work for me.
I wonder how much of the sleeplessness is part of my general anxiety. I placed a call to Nurse Practitioner K today, to check in and to find out exactly how I’m supposed to keep taking dabrafenib, the wonder drug, if it can elevate my liver function and I wouldn’t know it without a weekly blood draw. She said that I need to stay attentive to my general well-being, and that if I start feeling more tired than usual (hah – I will have to work very hard to figure out what my normal baseline is there), I should come in. This means tuning in to myself at a whole new level.
I feel like I am pretty aware of what’s going on with my body, generally. I can tell that my system has gotten over the worst of the steroid withdrawal. I didn’t spend the entire day in bed today, just a couple of hours. And I made it through a solo evening with the boys tonight without coming close to freaking out. (Even when Young A peed all over the just-cleaned bathroom floor due to bad aim.)
But I think the sneak attack of the brain tumors has probably changed me forever. I had headaches – just headaches – and I didn’t know what was happening to me until I had trouble talking. I wasn’t scared last fall, when cancer made a move on my lungs. I was pissed off, but not particularly scared. Now that my brain is involved, maybe I am a little scared.
In a couple days, I’m going to do something I haven’t done since junior high – go see a therapist, one who works with cancer patients. I’ve gotten pretty far for years with the self-talk I’ve done in journals or other writing (like this blog), but I think I may be at a loss for how to cope with the anxiety that builds up in between scans. My next scan is July 13. That’s not very soon. The lack of information concerns me. Maybe I’ll learn some new ways to cope with it. Maybe I should make a list of topics to cover, so I don’t misspend my hour.