Christmas spirit

It was a great Christmas day!  Apparently I am the only one in the household who still wakes up super early on Christmas morning and can’t get back to sleep.  Eventually I just went downstairs, made coffee and prepared a sweet baked pastry to share with the sleepyheads as they arose.

I fired up the gas log for the first time this season and Marlee, Abby, Alice, Mary and I opened stockings.  No grumps in the bunch.  We ate the Monkey bread and then did the gift exchange.  It seemed like we had a lot of gifts and lots of thoughtful stuff.  Abby gave Mary and me a ukulele and I vowed to actually try and learn to play at least a few chords that might add up to a song.  I downloaded a tuner app and uke lessons on my iPad.  Marlee set me up with the socks I asked for and Mary and Alice gifted art.  Mary acquired a framed, numbered linocut print from one of my favorite local artists, Alynn Guerra. Alice, along with her boyfriend Zack arranged for an original cartoon drawing from Jeffrey Brown.  Jeff, a now-famous (in certain circles) graphic novelist, used to be my intern at GRTV back in the 1990’s.  I wrote about this back in June. The cartoon features Elvis, our cat and me.  I was quite touched!

 

It was a laid back afternoon with Alice and Abby bidding adieu to hang out with their mom and their maternal grandparents, Harold & Carol, and the rest of us napping, tinkering with Christmas presents, doing dishes and gorging on sweets.

One late afternoon Christmas phone call I received was an automated call from St Mary’s Hospital reminding me of my CT scan on Thursday morning.  I must arrive early to have blood drawn.  It has been 6 weeks from my last x-ray showing no change or cancer growth and I expect this week's scan will reveal the same.

I had what felt like a pretty ridiculous thought: This could be my last Christmas.  Of course it could be your last Christmas or anyone else’s last Christmas but usually we don’t think about these things.  Mortality consciousness comes with this territory. I regretted having the thought (especially since I don’t feel sick at all) but upon further contemplation, I decided that remembering how short life is could really help one focus on the important things and especially avoid the petty negative interactions and the cantankerous moments.

So this was the sweetest Christmas ever!  And it continues… tomorrow is my extended family Christmas and Saturday is my in-law (Willey) Christmas.

Learning about CIPN

I’ve been feeling real good lately.  My last few days have been filled with what I’m calling the “I’m back!” tour.  I’ve been popping in on friends and looking for opportunities to eat varied cuisines.  It’s all good, but one haunting little reminder of my recent chemo past has been numbness in my hands and feet.  It came on late in the chemotherapy and I just assumed that it would subside along with the other side effects.  But strangely it seems to be getting more pronounced.  My fingertip sensations are a bit dull but I notice it particularly in my feet as I am walking around more.  When I get in bed at night, it feels sort of like the sensation of how you feel after you walk around in the snow for a long time wearing improper shoes.  Except when I reach down to thaw out my toes, I realize that they are not really cold.

So this afternoon, my doctor’s office called to make sure I had received the info in the mail for my next CT scan. At the end of the call, I asked about the numbness and when I could expect it to go away.  The scheduler I was talking to, who is not a nurse, informed me that usually it does not go away.  She had a family member who has permanent numbness, which is a real drag, but at least it is better than the alternative of having thriving cancer cells.  She told me it is called neuropathy; more specifically, Chemotherapy-induced Peripheral Neuropathy or CIPN. 

I had to look it up on the Internet.  I learned that the symptoms tend to escalate for about 5 weeks after the chemotherapy is done (definitely my experience) and while often they will improve slightly, usually you are stuck with it for the foreseeable future.  The therapy to treat it is more about living with the symptoms and less about curing it.  One fortunate thing is that often it causes pain and in my situation, that does not seem to be the case.  It’s more like a moderate but omnipresent case of “pins and needles”.  It sometimes makes me walk funny (although I walk funny anyway) and occasionally stumble.  I’ve noticed that my clutch pedal technique has suffered a bit, as has my card-shuffling prowess.

I have to admit that this news has taken my current “high” down one notch.  I keep thinking that long hikes are probably out of the question and my fantasy about learning to play the guitar will likely remain a fantasy.  For the first time I’m feeling like maybe I really am receiving disability payments for a legitimate reason.  And then again, I have no pain, so this is really a mild case of a condition that others suffer greatly.  It’s just one more new normal.

Tonight I took Abby and Marlee to see the coming-of-age film, “The Perks of Being a Wallflower”

It had pretty good ratings but since it was “teen” movie, I had low expectations.  As it turned out, I loved it!  Some pretty serious subject matter and plenty of very good acting.  There were some scenes of sex and drugs, which I'm sure made the girls uncomfortable to be sitting next to a parent.  But it also contained one of my very favorite film emotional flavors: sweetness.  It was a great palette-cleanser to the non-metaphorical hot pretzel with nacho cheese goo that the concessionaire at the theater talked me into due to its on-saleness to special customers like me.  Unfortunately, right now I can be talked into eating just about anything.

Inspiring show

Last night I had the second opportunity to project images for the Wealthy Orphans. 

Rick Beerhorst, the artist/band leader, got a gig for the band at Calvin College’s campus coffee lounge, The Cave.  A couple weeks back there was an album release concert at the Pyramid Scheme, for which I created a moving backdrop of “found” film images.  It was a fair amount of work for one performance so I was happy to reprise the sceening for a second show.

When I arrived at the venue, the projector and screen had already been set up by the college AV staff.  I tested it with my DVD and all seemed to be working. The Cave was a much smaller location for the performance and the low ceilings required that the film show next to the band instead of behind them.  Not ideal, certainly.  There was not a ton of seating to begin with and half the audience would not have a clear view.

It was great to see all the band members again.  I had only met them the one other time but all remembered me by name.  They each expressed enthusiasm about showing the film.  After the sound check, we had an hour to see who would arrive to listen to the show. There were free cookies at the coffee bar.

As it turned out, college students on a weekday night either had a lot of homework or had better things to do than see a free concert.  There was a smattering of people clearly present for the music and an additional bunch there for coffee, homework or personal conversations.  The band, however, rocked it despite the limited audience.  I kept peaking over my shoulder (I was manning the projector toward the front of stage) and the few people seated in the section with a clear view of the screen were engaged in personal discussions or in some cases, their glowing laptops.  The band didn’t seem to mind.  They were having great fun on stage and clearly enjoyed playing together.  I also was enjoying myself.  The more intimate I am with the music, the more I find myself falling in love with it.  I loved the serendipity of the moments when film images matched to the music in either rhythm or theme.  It didn’t matter that it was mostly a private show, just for me.

Afterwards, no one in the band seemed at all disappointed in the lack of turnout.  It was an opportunity to play together and explore the music and that was enough.  Spirits were high. 

Walking back to my car, I looked up in the sky to see a brilliant display of the winter constellations. I realized it was my first time in a long time to see Orion and the Pleiades and they seemed liked old friends.  I’d spent my spring, summer and fall attached to a food tube that kept me inside at nights.  It was a thrill!  Driving home, a falling star streaked past my windshield view.  I felt very lucky.