Water Bottle Hope
Some of you may remember the swag that arrived with my first box of targeted therapy. The most useful item was the water bottle, emblazoned with the slogan Hope. Daily. (Silly me– I didn’t realize daily referred to their pills I was taking every day. At least they didn’t put the company name on the bottle.) To be honest, I feel gratitude more than I do hope. For now, that orange pill is working. Besides, it’s a really good stainless steel water bottle. It’s worth at least $29.32 per day.
You see, without insurance, each pill would cost $586.40. This year, since it appears we are not receiving the pity discount, our cost, after insurance, is $29.32 per pill. We pay, out of pocket, $879.60 per month. How lucky are we that we are in a position to do this? (Don’t get me started on the profit the pharma company is raking in on this therapy alone. At least they provide it for free to qualifying patients.)
When I leave that bottle somewhere and can’t find it, my joke with myself is that hope is lost. When I find it, I exult: Hope restored!
Sometimes, though, even with my water bottle in hand, the days feel a little murky.
Take last week. The seven or nine days leading up to my brain MRI, I couldn’t settle into the day. I was touchy, anxious. I told CancerShrink the long list of possible reasons, circumstantial and psychological, that this might be true. (“I’m just revisiting old friends, who are bad for me,” I confessed.) He added, quietly, “And the brain scan?” Slapping my head: two years into this Cancer Thing, shouldn’t I know by now? “Oh, shut up,” I replied.
Same Old, Same Old
Saturday, 2 p.m. MRI day. I’d woken up calm. Resolved. I went through my plan for the day, swallowed my lorazepam, and we headed off to the cancer center. I love lorazepam. It makes you just not care about anything. And then, sleep. I slept through most of the MRI’s banging. At one point, the loudspeaker came on and said something about not moving my head. Whatever– I apologized and went back to sleep. I then napped the rest of the day away, slept for 12 hours, and woke up without a care in the world. The test was over, the images wouldn’t be read until Monday, I was free.
In the meantime, that damned water bottle went somewhere I couldn’t find.
Radio Brain
This time, there was a new place to sign on the form. Would I like to receive my images by email? Oh, you betcha. I’ll tell you, when mine came they looked nothing like what Dr. Radiology shows me. One was a blurry white cloud– granted, sometimes I do feel my thinking has entered the zone of marshmallow fluff– in others, it looked like I had a radio sitting in the center of my brain. Clearly I’d progressed from cancer to an alien take-over. A couple of times, I checked MyChart for a radiology report, then forgot about it. The test was over; I felt fine.
Until I didn’t. Monday afternoon, sitting at a red light, waiting for the left turn signal that would send me across three lanes of traffic, I saw a notification pop up on my phone. I had a new test result.
The light turned green. I hadn’t even picked up my phone and suddenly I was in a cave of tingling dread. I parked. Opened the app. Found the test result.
Nothing new.
Nothing new.
I will tell you the sun was out in that moment, a rarity in this soggy Portland spring. I sat and let the sun and the news sink in.
It’s a week until my followup visit with Dr. Radiology.
But the stupid water bottle that’s gone missing for 6 bloody days? I found it last night, tucked into a niche in the stairway where I must have put in when I grabbed some rain boots.
Hope restored, indeed.
Thanks for reading. Here’s hoping you’ve got a nice cool sip of hope in your day.
And now, a report from the cake department, featuring doll party cupcakes in turquoise, pink, and lots of glitter; Sponge Bob and Dragon Ball; and a box for young adults aging out of foster care who graduated a life skills class.
