Thursday, October 13, 2016

Deforestation #6 is Here, Finally!

Hi Folks,

Here's another check-in about my "Unintended Journey." Today, Thursday 10/13, is the 6th and possibly final full blown infusion of chemo (C.H.O.P.) and trial drug.

Thank you's are the important place to start…

  • To Mercy Auntie and Ellis Uncle (he is my dad's younger brother, #8 of 14 kids) for coming all the way from Cleveland armed with food special made by Mercy Auntie, to enjoy a couple of weeks of banter, local exploration, fragrant meals and general goodness.
  • A week after their departure, in came Tessy Auntie and Stephen Uncle (another of dad's younger brothers, #5 of 15 kids), up from York PA to join for this cycle.
  • To my Mom, Dad, Susan and Cindy, and Chris for support from afar.
  • For the many folks who include me in their prayers & novenas - I cannot thank you enough.
  • To Anand for stopping by yet again to meet up and this time also pray with Ellis Uncle.
  • To colleagues and friends who send a note to check in and share thoughts, or call to shoot the breeze like the tremendous, meandering Skype with Chris and Sean.
  • To Sebastian, who regularly Skypes to see how things are going.
  • To Rani and Dave, & separately to Shanthi, for the care packages they sent - - I know your days are busy so making the time to ship something physical (the old fashioned way at a post office; not via is hugely appreciated.
  • To Mom for the making and the shipping of a large Tupperware container of baklava - this is as nuanced and delicious as you will find anywhere. Plus, I know how much you would rather be painting another watercolor like these than cooking A-N-Y-T-H-I-N-G.
  • As always, to the team at the Seattle Cancer Care Alliance who remain vigilant and upbeat.


  • 5 rounds done, the sixth (and perhaps final) one is today, Thursday. A good thing.
  • Since I do hate needles, particularly when used to poke me, I was happy to see the following: 7 daily injections of Granix catapulted my bone marrow into overdrive - - with the white blood cell (WBC) skyrocketing from 1.7k to a whopping 36.9k. (WBC should be between 4.3k - 10k.) Bye bye needles, at least for a while. :)
  • Weight is steady - not going down as was my initial hope, but not going up, despite waves of expertly cooked food by Mercy Auntie.
  • Deforestation update: yesterday I realized I cannot really grab my once long eyelashes, and also discovered I must have been intermittently doing this for years (until now, eh?). Gradually, the chemo makes a human's outer shell as smooth as Michael Phelps' high tech swim suit.


  • We are at $119k as of early September bills (not including what the trial is covering). At this point, a bill for say $2,500 barely raises my heart rate.


  • Life is Relative. This view by Uncle Jim has stuck to me like a barnacle as I was working at a summer camp for special populations. Your point of reference certainly influences how you interpret information. At SCCA, once again I was re-introduced to how good life is for myself - I sat next to a cheery lady in her late 60's who happens to be combating stage 4 cancer. Geez, I am in awe listening to her light banter, and for some reason that I cannot pinpoint, a wave of melancholy floods me. Why her @4? Why me @2? Her stage 4 to my stage 2 is akin to NBA finals versus high school JV. My battle is child's play.
  • Safe Zone or War Zone: On 3 different cycles I have had to deal with elevated body temp on the day my immunity was at its lowest. The guidance: you're in trouble if your temperature is above 100.5 °F for longer than one hour. If you have raised children you know it is very easy to pop above 100.5 °F. Plus Tylenol and Motrin are a no-no - - they simply mask the real situation. What to do? Head to the emergency room. Yet isn't that where the superbugs reside? Akin to advising that if a cat scratches you, jump into the lion's den? I did visit the ER after cycle #1 but never again. Call it the incentive I needed. Per my dad's direction, as I hit my immunity nadir, I am flush with fluids, and lying low away from people and their germy germs (no offense to all of you). I am sure there are fewer, weaker bugs at my place than the ER.
  • Schizophrenic Days. The treatment regime makes for a peculiar leave of absence experience. Without much warning, some days are sidelined by side effects and I am happy to not be at work - - it would be woefully unproductive or simply not possible. Other days, the maladies vanish and leave one with a wonderful if somewhat guilty open schedule. Predicting this is akin to predicting the weather 3 days out. I don't know how people undertake work and cancer therapy.
  • Disrupting Routines. I have noticed that when children grow up and move out, the parents can get into routines that may be too fast and fixed. Day trips, new cuisines, different entertainment can slowly fade away without detection. Being creatures of habit can be a bad thing. When family members visit me, we all benefit - I get coverage just in case my day goes sideways, and they spend time in a new place, introduced to some of my routines which are largely new to them. I learn their habits also, and it is all around very nice.
  • Vicariously Remembering Our Own Discoveries. "Let's get lunch from the taco truck." My declaration met with puzzlement from Ellis Uncle. (And the same a few days later when Mercy Auntie arrived.) "You mean Taco Bell?" he asked. Nope it's a truck where they make food. His eyebrows furrowed. "You mean something in the grocery store?" Nope. When we pulled into the gas station parking lot, and he saw the handful of people in line, a smile erupted. "Here? Food is made IN this truck?!" Later when asked about his lunch, my meat lover of an uncle had only one answer, "they were fantastic. The best tacos I have ever had. I found Cleveland has taco trucks." Ah, I vaguely remember my first taco truck experience. And what I had forgotten was re-enacted in front of me. [ He later ruminated with Mercyauntie, "why don't we run our own truck? It could be Indian food. People would love it." Certainly easier said than done, but the larger point was I had two fans. ]
  • An Inflection Point is Around the Corner. One funny thing about chemotherapy and radiation - - both are carcinogenic in and of themselves. That is on top of side effects. Why is this on my mind? Because in about six weeks we'll review results from a PET/CT scan, yet a "clean read" only indicates the cancer levels are below detection. The thugs are still within the walls of the fort. So do I undertake a round of radiation to really crush whatever is below detection but present? The goal is eradication, plain and simple. The downsides: 1% chance of spurring some other kind of cancer within the next 20 years; good chance of damage to the stem cells in nearby molar teeth, meaning some may fall out in 5 years; good chance of damage to left side saliva glands so dry mouth, forever; perhaps 4 weeks of painful mucositis. The upside: lower chance of a relapse into a t-cell lymphoma that's angrier, more virulent, more resistant. My dad, a veteran of countless medical battles and sieges, keeps me focused on the final goal: being cured of the lymphoma. I believe the Romans sowed salt into the fields in addition to burning Carthage to the ground after the 2nd military campaign, to ensure the invaders were never, never a problem again. But in my case, I would be consuming some of the salt aimed at my invaders. So, do I do this?
  • Vicariously Remembering Our Own Discoveries, Part 2. Year One of living in the Seattle area came lurching out of deep memory, again due to my aunt's and uncle's visit. I had a day free of side effects so thought let's get out for a bit. "We're taking the ferry to Bainbridge Island," was met with a distant look. "So we're taking a boat to that place, right?" I simply said wait until you see. "Ha! We are going to drive ON to this boat? It's huge, it's not a boat!" Yup I remember that reaction from myself way back when.
  • Peas in a Pod. Having family stay for more than a few days has revealed how symbiotically people can live. My uncle arrived a few days before my aunt. "Why are there blue jeans in my suitcase? And why are Mercy's clothes here too?" he asked me. I replied, what was your answer when TSA asked if you packed your suitcase yourself and know of its contents? Sounds like a good problem if someone is taking care of the packing for you, no? Ellis Uncle paused, smiled, went back to the bedroom and came out in blue jeans. Days later, she chuckled at her ploy to expand his wardrobe. ( Thank you Mercy Auntie! )
  • Velocity Demonstrates Mastery. "I don't think you will have enough food when we leave," my aunt said with a concerned look. "I will make a biriyani, red fish curry, lamb curry, ok? Then I need to pack." It was 5 pm. Lo and behold, by 8 pm she had not only retired to get ready for the morning flight but also served dinner, and whipped up these hand crafted dishes. What occurred, and how, is still only described by instructions like "use the right amount of cardamom, not too much." She was all business, I gladly refused to stop her, and hence luxuriated in her culinary brilliance for days.
  • Irish Toast to Ponder: Slow versus Fast. Lena sent a set of Irish toasts, and the latter part of one struck me: Here's to a long life and a merry one. A quick death and an easy one. Seeing people at SCCA made me think of the merits of exiting the Earth quickly versus slowly. Joy Uncle even said he prays each night, "thank you for today, I pray for a great day tomorrow or that you take me while I sleep." Hmmm, there's certainly something to the option versus lots of chemo, radiation, etc. After some thought on my walks, I do prefer this alternative much more also.
  • Chemo Changes Everything (Careful this may be too much information…) I have lyrical guttural unpredictable eruptions of gas. I do think it's my entire internal constitution acting out in displeasure about the invasion of this suite of medications. One more reason that I will be happy when this is over, ideally with a conclusion that prolongs my stay on this planet in a healthy, productive and happy manner.

In Closing, Some Refined Goodness

The meaning of life is to find your gift. The purpose of life is to give it away.

John Wooden
Things work out best for those who make the best of how things work out.

Pablo Picasso
Only put off until tomorrow what you are willing to die having left undone.

William Arthur Ward, from Rules for Life. A poem called Before We Speak
Before you speak, listen.
Before you write, think.
Before you spend, earn.
Before you invest, investigate.
Before you criticize, wait.
Before you pray, forgive.
Before you quit, try.
Before you retire, save.
Before you die, give.

From the Dhammapada, Chapter 1 - Choices
We are what we think.
All that we are arises with our thoughts.
With our thoughts we make the world.
Speak or act with an impure mind
And trouble will follow you
As the wheel follows the ox that draws the cart.

We are what we think.
All that we are arises with our thoughts.
With our thoughts we make the world.
Speak or act with a pure mind
And happiness will follow you
As your shadow, unshakable.

"Look how he abused me and hurt me,
How he threw me down and robbed me."
Live with such thoughts and you live in hate.

"Look how he abused me and hurt me,
How he threw me down and robbed me."
Abandon such thoughts, and live in love.

In this world
Hate never yet dispelled hate.
Only love dispels hate.
This is the law,
Ancient and inexhaustible.

You too shall pass away.
Knowing this, how can you quarrel?

How easily the wind overturns a frail tree.
Seek happiness in the senses,
Indulge in food and sleep,
And you too will be uprooted.
The wind cannot overturn a mountain.
Temptation cannot touch the man
Who is awake, strong and humble,
Who masters himself and minds the dharma.


Mercy Auntie and Ellis Uncle watch the seaplanes take off at Lake Union, © 2016, Abe Pachikara (Click for larger images)


Tessy Auntie and Stephen Uncle arrive at SeaTac airport, © 2016, Abe Pachikara (Click for larger images)

Have a tremendous day!


No comments: