Need a New Metaphor

I keep talking about when things might turn the corner. I don’t expect things to change dramatically, just want to see some progress. Ok, maybe I was hoping for dramatic improvement quickly. That ship sailed. As did the “at least things won’t get worse” ship. (Trying out a nautical metaphor)

Radiation and chemo ended a week ago. By last Friday, felt like a corner was somewhere nearby.  Then the bastard took off on me. Sprinted five miles up river (serpentine route), and hid in a poorly designed hotel. And then buried itself in an LSD trip from the 70’s. Blanket apology to anyone I have talked to from last Friday through yesterday-I have been really out of it. I meant all the nice things I might have said, but none of the rest.  

So, every time I talk about that elusive corner, it changes. So perhaps my problem is just finding a better metaphor.

The thing is, corner pieces has always been my metaphor. When my oldest Kaileigh was little, we would do puzzles together. We would start with the corner pieces and try to build from there. It felt like a succinct life philosophy- find the corner pieces and then try to fill in the rest.

My very first “blog” was a series of essays written on MacWord from about 1993 to 1997, chronicling the joys and absurdities of part-time single parenting. I think I have one hard copy somewhere - possibly still with the tear-off printer thingy attached.

My second attempt was my actual blog cornerpieces.blogspot.com. That one spanned the twin period, from 2005 ish till a year or two ago.

This is my third iteration, and certainly not the last. I actually think I’ve found my corner pieces. Jill is one. The twins are one. Family and friends are another. And I can say without a doubt that Kaileigh was the very first one I found. She is an amazing, loving, funny, brilliant, kind person who is finding her place in the world and having amazing adventures. She just spent six months traveling South America solo, and is gearing up for new adventures to come. She returned to Austin this week and came over last night. Though my corner to turn had been elusive, I can see it now. My corner piece brought back my corner. Still may take some time to navigate the turn, but it finally feels like it is possible.

So screw it, I’m keeping the corner metaphor. And for the record, I do believe that there can be more than four corner pieces. My puzzle, if ever completely assembled, may very well be an octagonal cylinder, which would have, well, more than four.

During, By the Numbers (with pix)

Yesterday I finished (mostly) the "during".  Chemo ended Tuesday night, last radiation was Wednesday morning.  I have a tapering off of steroids over the next few weeks as I come down from what I can only describe as a two-week long LSD trip (which I am only surmising, with no actual experience.  Really) - more on that later.  I've cut my pharma buffet in half, but added one new one to address thrush (yes, what babies get.  And I could have heard him wrong - might have been colic, or scurvy) caused by the steroids.  The lovely feeling of swallowing hard pieces of, something, every time I eat.  Adds a bonus dimension to the Kemo diet (Ⓒ pending).  Without further ado, "during" by the numbers:

• 43 doses of chemotherapy - 6,880 mg of Temodar.  It surprised me that this is equal to only about 1/4 ounce of actual poison.  I would have put it closer to 1/2 a metric ton.  But the inter-web conversion page disagrees.  It's also equal to 0.001083729 stone.  Not sure what the hell that means.  Remind me, why didn't we convert to metric?  And just to go one additional ridiculous step farther, I then tried the inter-web English to Spanish conversion page.  Apparently, the Spanish translation of Temodar is Temodar.  Sounds better in Spanish.
• 30 doses of radiation from late June to July 31st, for about 10 minutes a day only on days that banks and state government are open.  In total, about 5 hours of radiation.  Not sure the actual full dose, but think it's measured in Curies.  Or Roentgens.  Which actually sounds kinda cool.
• 20 pounds - the amount of weight I have lost from my Kemo (Ⓒ pending) diet and my new baby disease.  Some amount of the weight loss  may also be attributable to:
• 0 - the strands of hair on my head.  Can't imagine it weighed that much, but there is none there now.  Leading to:
• 1 - the number of years I should wait before actually seeing if the hair will grow back, according to the Radiator.  Apparently, my follicles will need a bit of a break and need to take the year to see if they are in it for the long haul or have decided to quit me.  To be honest, I will get used to the bald look and embrace it, but it has been a bit more jarring than I had expected.  My self image as someone who has hair (albeit receding and graying), changed quickly and dramatically.  The person I see in the mirror is not who I recognize.  And he is actually currently a little out of sync with me, which is disconcerting.  Again, more on that later.  And related to this:
• 40 - my estimated dollars of savings in shampoo for the next year.  Possibly offset by higher expenses on shaving equipment, head buffing, polish, or whatever else I will need.  Brave new world.
• 2 - number of rainbow unicorns who have entered my life.  One came with a lovely bouquet of fruit from my friend Pam Spann, and one was waiting for me in Jill's car at the end of the last treatment.  Not only is brave Dr. Sparkles, the Rainbow Unicorn, now living in the Smith house, she has a baby Sparkles to take care of.  And, by the way, instantly comes in above the cats in level of authority.  

Dr. Sparkles, the Rainbow Unicorn, seen here with Baby Sparkles

• 1 - scary-ass mask that I took home, and had no idea what I was going to do with it.  Fate intervened, as I left Dr. Sparkles and the mask in Jill's car yesterday when she dropped me at work.  One could theorize that the Texas heat might have melted the mask flat, but I know that Dr. Sparkles has something to do with it.  Upon closer inspection, I'm less impressed with the precision.  I wonder if the masking tape marked with "X" was for guiding the machine that goes "Zap!"

Radiation Mask, after righteous attack by Dr. Sparkles

• One - participation award from the Austin Cancer Center.  They didn't play me pomp and circumstance, but I did prevail on them for one last "I Will Survive."

My participation award

• 1,392 well wishes, thoughts, prayers, "you got it", "thinking of you", "how can I help?", and the like.  And counting.
• One - Amazing Jill.  Enough said.
• Two - homemade Matzoh Ball Soup donations, from Melissa and my Aunt Randy.  Plus a ton of food, rides, hats, cards, and other enormously helpful things from so many people.  I think I finally have an idea of how to be helpful to someone else who goes through a difficult time.  Food, rides, keep in touch, send love, read their blogs, and take their pickles, if offered.
• 10 - times I listened to the song "Radioactive" on my radiation playlist before I realized the only person I was trying to amuse was myself.  I then went to a full-on shuffle of my "Cycling" playlist, which includes a few hundred random songs, chosen from various times of my life and generally ones with a good cadence for cycling.  I was hoping to find some meaning from the last couple of random songs.  You know, something profound from the playlist randomly giving me a message of hope and survival.  Gonna have to look elsewhere I fear.  Last two songs were "Assholes on Parade" by Timbuk3 and "White Flag" by Dido.  
• 2 - weeks of straight-up tripping.  The Radiator told me that the visual stuff should begin to go away, but gave a timeline of weeks or months, versus the days scale I was hoping for.  For the past two weeks, I have gone through a lot of interesting things.  Each of the visual distortions have their own clever name: stop action animation; body and object dysmorphia; movement contrails; mirror dis-synchronicity; "didn't think my handwriting could actually get worse", and "WTF?".  Look for more description in a chapter of my coming book "The Kemo Diet and Consciousness Awareness.  One Man's Journeys through his Chevy Astro Cytoma Brain Tumor" by Dr. Rainbow Sparkles.

New, improved, hairless Russell

One day later.  Hair grows so fast