Wednesday, July 20, 2016

Deforestation Round #2 is Around the Corner

Hi Folks,

Here's a check in about the "Unintended Journey" as I have called this sojourn into the world of cancer. (Another, perhaps more fitting name is "The Deforestation" as I do think disruptive events make one remove at least some of the clutter in our life and our views.)

First off, thanks are in order to many people. You have made this a very different path.

  • Of course it starts with my parents and siblings Cindy and Susan, and Chris, for their steady and deep attentiveness
  • My mom's sister Regina (we call her Regiauntie) for flying in for infusion 1 (Paul calls it Deforestation 1), making a small mountain of food, and putting rigor into how I handle my meds
  • My mom's brother Mathew (Machayan) who came in on short notice after Regiauntie and stayed for a number of days when it became clear this gig would have nasty, if brief, spikes
  • My cousin Renju who also stuck around after a whimsical birthday weekend to help as my immune system insidiously and invisibly cratered for a couple of days
  • Friends who have checked in regularly, and at whose place I have crashed, like Rekha and Peter
  • Colleagues who sent very thought provoking books (like Many Lives, Many Masters from Nisha, and It's an Extraordinary Life from Linda) and called (like Sean, Steve, & David)
  • Thoughtfully crafted Care Packages, sent by my sister Susan and Chris, and from my cousin Serena and her family. These are not something I am used to getting, and certainly something I will make a habit of creating & sending going forward

Status: I have completed "round 1" and the next one starts this Thursday, game time is 1:00 pm, PST.

Progress: Directionally I see a bit of traction when I look at my own tumorous tonsil but the real test will come in a week or so when we run another PET / CT scan. In terms of logistics, I was totally enthralled to learn of and get a port installed in my chest to make the chemo infusions safer. As wild is the way all the tubes and IV gadgetry connects, splits, pinches, etc. - a sterile Legoland unto itself.

Fireworks: The first cycle was akin to a trio of nasty, unexpected & unfamiliar squalls out on the ocean. Each came and went with equal speed. In each case I had the help of a family member to provide me care and cover. 1) Nausea came first and in retrospect I could have helped matters to some degree by avoiding a heavy meal after the round of chemo. To quote Forrest Gump’s mama, “stupid is as stupid does.”  2) Then came the mucositis which basically sidelined my mouth - a funny notion. Yet it was no fun to swallow, move one's jaws much nor talk. 3) Finally, sneakiest and most dangerous was the 95% drop in immunity for a few days - you don't feel or see anything but your white blood cells have left town, & even a small kid's sickness can flatten you, quickly. Without this celestial Kevlar suit, better to stay home a bit neurotic (if you know better) and veg out to Netflix or the Republican National Convention.

In truth, none of these were surprises - my towering Ukrainian oncologist carefully outlined all of them.  Yet it's a testament to book knowledge that has not been internalized and made useful, versus personal experience and prudent navigation of the mine holes. As they say, fool me once shame on you, fool me twice shame on me… but that won't happen.

Goodness and Sunshine:  My parents have landed in the Seattle area largely because I called them last week instead of Skyping so the only info they received was my crippled voice which conveyed an incorrect and exaggerated image of death warmed over.  And that was that. They are here. And frankly, now they sleep better. On my front, I get the instant advice of a top-shelf Board certified surgeon plus the whimsy of mom's disruptive mind. Dad has already provided late night medical counsel otherwise given in an ER. Mom's opening salvo was one of the poems she has been saying since elementary school, by the great William Blake:

Joy and woe are woven fine,
A clothing for the soul divine,
Under every grief and pine,
Runs a joy with silken twine.
It is right it should be so,
We were made for joy and woe,
And when this we rightly know,
Through the world we safely go.


  • Packaging is powerful. A wounded voice is about all you need to frighten people who call - and far more than I realized so careful to not inadvertently unleash it. Your voice is "you" over the phone and it will make imaginations race when it conveys a modern day Lazarus.
  • I can have a foolish confidence. Going in, my own opinion was I will beat this handily, gird myself and gut out the tough times and overall, it will be a minimal distraction. The last phrase is the problematic one - example is I was hoping to join some visiting cousins drive back to the Bay Area.
  • Vigilance is central. No unforced errors, particularly that may complicate things when immunity is down.
  • Staying connected helps. Funny when I register the goodness from a call, email or text that is simply to check in. No brilliance needed. I think of this both as one with lymphoma, and as one laid off twice in my past who now has friends recently laid off. All too often, people  can end up feeling oddly isolated only because "their crew" hesitated to call feeling they need to say something meaty. The call itself is the actual meat. As Philo of Alexandria once said, “Be kind; everyone you meet is fighting a hard battle.”

Finally, I think the deforestation my 14 year old, Paul, mentioned in passing is actually occurring - - it's a loose repeat from when I was around 28. Back then I had a thick, wavy head of hair that was a slave to any amount of humidity. Most days were bad hair days, IMO. Such a nuisance that my daily prayers included a request for a thinning. And they were answered (more than I asked for perhaps?) as I began to see loose hairs in the shower. "Thank you, God!" was a routine chant. Now, in the shower it's that next frontier Paul was inquiring about as what's left of body hair makes a steady exodus :). Again, I quietly say "Thank you God" as it's proof of my access to drugs now in pitched battle.  :) How about we help the CHOP + Folotyn meds do their magic by closing with the battle cry / haka of the New Zealand All Blacks?

Have a great summer day… [ do let me know if you want to opt out of these, no worries ]


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