Cancer Swag & So Many Phone Calls | Apr 7 2022

Thursday April 7, 2022

I. Might as Well Be A Badass

I walked around for days repeating the saying, above. It buoyed me up.

I’m not sure what you’d call this kind of saying. I think affirmations are supposed to cheery and positive; mantras maybe more…spiritual? No matter. Now I’ve made a bunch of illustrated sayings, kind of a collection of “get on with it”  exhortations for me and my lung cancer folks.  Mine tend toward the profane (surprise!), dark (surprise!), and ironically bracing (a combination of coaching and inspiration). 

I was motivated by a boring Zoom meeting.  That’s always a good time to play with basic settings on your computer. That day, I was playing with my screensaver setting. I realized there was a scrolling group of frames into which I could import different images. So I started taking quotes that were neither saccharine nor simplistic– too often, the typical cancer “inspirations”– and illustrating them. Then I made a screensaver collection of them, Every day, a different one speaks to me. I carry it around all day. 

I think these are relevant not only to cancer folks. I’ll post them one by one; maybe you’ll like them, too.

II. Stop with the Phone Calls Already

I want to begin by saying, I am receiving state of the art cancer care. It is nothing short of amazing; when I hear what other people experience elsewhere, I am simultaneously appalled by their experiences and grateful for my own.

BUT. If I get one more phone call from anyone related to my cancer-ness, I swear…. Maybe it’s annoying because lung cancer events come in waves. When there’s a crest in the wave, cancer seems like a full-time job. When there’s a trough, it’s more like, “Wait, what cancer?” In this post-gamma knife week, the wave is beginning to recede but I’ve still been chasing down more appointments. (Gotta keep that calendar full.) I’m ready for the trough.

I received a call from the specialty pharmacy: Have I been taking my medicine? Do I have a schedule for when I take it? Have I missed any doses? Have I experienced any __________ (list of side effects). The pharmacy person said they’re working with Big Pharma Company to track this data. Good news: no side effects. But, really, I’m paying $83 per pill and I’m going to miss a dose? Besides, in the cancer swag I got with my pills, I got a helpful pill case. I can detach a single day’s compartment and stick it in my pocket. Handy! (More on swag, below.)

Another call: from Dr. Oncology’s office. Have I been taking my medicine? Do I have a schedule for when I take it? Have I missed any doses? Have I experienced any __________ (a list of side effects)?

Another call: Dr. Lungs’ office, wanting to schedule another pulmonary function test,  six minute walk, and doctor appointment. That’s an entire afternoon. I told my husband it would be a great chance to get in some miles on my bike; I could ride there and back!  “Maybe you could use that instead of the six minute walk,” he deadpanned. Maybe I’ll tell  Dr. Lungs that riding out there (probably will take about an hour, and an hour back) seems like adequate proof that my pulmonary functions.

And there were other calls. Stupid cancer.  Stupid __________ (fill in the blank with your own phone peeve, health or otherwise.)

III. Cancer Swag

I got my first shipment of osimertinib, the TKI (tyrosine kinase inhibitor) I’m taking, in the mail from the specialty pharmacy. That involved more phone calls than you could believe. (One was an automated call telling me to expect a call.) Multiple calls from the oncology pharmacy at my cancer center and the specialty pharmacist, all with the same information (which is helpful). (I suppose.)  Multiple calls from specialty cancer pharmacy nurses and my cancer center checking on how I am. (Again, so grateful for the quality of care; what a pain in the butt.) Calls about when to expect the medicine, when it’s been shipped and should arrive, a call confirming it’s arrived. We’re talking hours of phone calls. Given the cost of this stuff, I guess it’s appropriate, and as my family reminds me, many people benefit from the information and attention. It seems to just make me grumpy. (What an ingrate, right?)

But did the medicine come in a nondescript plastic mailer? HA! Check out the size of the box, and the pile of everything that came in it:

Nice swag, eh? Handy pill case, as I mentioned, with compartments that slide apart and slip into your beaded handbag for those nights on the town. The purple padded zip bag– a lunch tote, perchance?– the cookbook, the multiplicity of shiny papers, the very high quality water bottle that keeps cold things cold, hot things hot. Nicest bottle I’ve ever owned. Damned if it’s not the most expensive water bottle I’ve ever had, though. ($2400 copay for one month of meds divided by 30 days of water bottle use equals a bottle that costs $80 per day. As much as 1 pill.) And the saying on the side? “Hope. Daily.” That’s nice, but I’d sure rather have a water bottle that said, “Research. Daily.” Or, “Medicine for all, not obscene profit.”

Enough from me. I’m working on a cake for a seven year-old whose favorite colors are pink, purple, and blue. What a joy!

Thanks for reading. Here’s hoping you have few calls and lots of bad-assery in your day.

Phone image by Vic_B

Swing image by Yatheesh Gowda