Here’s another check-in about the "Unintended Journey" I am on, as today is the 3rd full blown infusion of chemo and trial drug.
Thank you’s are again in order to so very many people…
- To my parents who have been watching close over the treatment, running the household and raising clarifying questions.
- To my sister Cindy, recently arrived and adding more goodness under one roof, with the Susan "on deck" as part of the changing of the guard in August.
- Thanks in a big way to people who have texted, emailed and called to shoot the breeze. As said in the prior note, the call, email or text itself is the actual meat.
- Thank you to everyone who sent me yet more books and reading material like the amazing "All the Light We Cannot See," and a special shout to the inimitable Chris Bernard who sent me a veritable library ranging from fiction to rarified sci fi to whimsical commentary.
- My mom’s older sister (we call her Monikochamma) and husband Uncle Jim came into town. The time together was akin to a very fine wine that you truly love but only break out for special occasions. In these two couples (Moni, Jim and my parents), I saw an intersection of family and deep, long standing friendships spanning over half a century.
- Very dear friends Teresa & Pat Patterson (Tequila and S***head) paid a visit due to the good providence of a previously scheduled trip to the area. The only regret is my chemo precludes me from the chatty, cheap bourbon I have had so often with Pat (bourbon of any manner is also out of bounds).
- Like a one-two punch, Alicia Patterson, 2nd daughter of the above and my god-daughter, happened to mosey into town separately of her parents. I had not seen her in 10 years – a head spinning example of how time flies and people undergo metamorphosis. Back in 2006 she was finishing 8th grade; now she is a rock climber, getting her PhD in Philosophy at Cornell, an alum from UMich and its track and cross country teams. Humans bloom in remarkable ways, no?
- 2 rounds done, 4 more to go. #3 is today, Thursday, occurring as I write this.
- Seems like things are working if I measure by the collateral damage of the chemo on two fronts: energy loss and hair loss (bald guys have a PhD in observing hair loss). Logically, the cancerous cells have it worse as they are the intended recipients, no?
- (At the risk of sounding like the starship Enterprise…) Energy levels are at 70% at best and trending downward as my running has gone from handily knocking off 2.2 miles at an 8 min pace, to not completing the same route, at a 10 min pace.
- As of this writing I have not shaved in 10 days, (a daily routine for the past 30 years) yet you’d barely know. It reminds me of trying to get into the bars, under aged, with a younger friend from high school, Kevin Murphy, who had about as much stubble as I do now. The bouncer shrugged in a dismayed, humored & somewhat helpless manner, saying "Dude, you don’t even have peach fuzz, just look at you."
- More definitively the results from the PET / CT scan yesterday indicate some measurable impact on the lymphoma. So good news overall, no?
- TTT mental exercise: When I learned of the lymphoma I informally did an audit that you may or may not find useful. Visualize an old fashioned scale. On one side are three categories of items: your treasures (handed to you without effort by yourself), talents (where you’ve taken strengths or passions and honed them further) and time (rewarding, non-trivial, experiences by which you grew deeper, sturdier, happier and / or broadened your world view). On the other side list the setbacks along the way. Take as little or long to do this as you see fit, but don’t exclude the obvious treasures like health, notable family or friends, stable country, etc. Now think of the weight each item adds on both sides, and consider how the balance tips. In my case, it was a blowout – my treasures, talentsd and time outweighed everything on the other side. Keep this list for future reference. For myself, when the cancer arose, this audit put things in a different perspective. Perhaps it would do similar for yourself.
- Diminished health elevates self-awareness, no? One point of random goodness is that I am now far more self-aware of the systems that have run flawlessly for years under my own hood (like sleep; eating / chewing / talking; plumbing; immunity and body temp; blood pressure). Why? Because currently they are running at 5% to 80%, and I can sense it. I now shake my head; I thought I understood my good health, but in truth I had a very modest appreciation of the years of smooth sailing and uninterrupted good service.
- Challenged assumptions and new paths. "Who am I?" is an ever mysterious question we have about ourselves. We’ll never fully know. Yet part of the answer comes from uncovering the many, many assumptions lurking in our personas which all too often are rudely awakened at the moment they are proven wrong. Our individual journeys will bring these into the light, and certainly a disruption may accelerate a particular discovery but it is not required. I think it is possible (albeit hard) & worthwhile to clarify personal assumptions methodically via reflection – – they strike me as the answers to a set of very basic questions about our outlooks. Arguably as important, once you know your own assumptions, what changes if the assumption was to be proven wrong? One example: for myself the cancer uncovered an assumption that I will live a long, long life. Holy smokes, what changes if that does not prove true? What are the other expectations lurking in my head and heart?
- The limits of Skype. I am a Skype fan. I have Skyped most Sundays since around 2011 with my parents and sisters in a 4-way session. It beats a phone call in so many ways. Yet, in having my parents here for longer than a week, I see in a much more nuanced manner the ways they are still vibrant and young in their outlook while contending with tricky physical changes. The weekend Skype calls have simply missed the latter.
- As in life, is true in healthcare – you need to own it. Overall the treatment regime has been without incident but it began in puzzling ways. As example, the results of the biopsy took nearly three weeks to be reported, an eternity as it was the info to size up my own cancer. So I started hunting up the chain and uncovered that the doctor’s name was somehow dropped from the sample so the lab would not share the info. Who owned this? Ultimately, I did.
- Less mystery = less angst. The vagaries and merits of the treatment have transformed from murky and bewildering to more expected and routine. This is loosely akin to the differences in experience from raising the first child versus the second one. Now I know to welcome fireworks around Day 4 and 10 after the infusion, and consequently hunker down for them, avoiding unforced errors on my part.
- My latest gadgety experience: a cardiac ultrasound (aka echocardiograph). WOW, do you need a reason to eat more healthy? More greens? Fewer bacon double cheese burgers and blooming onions? Less high fructose corn syrup on your pancakes? If so, watch your heart’s mitral valve in action. It took my breath away – the sheer intensity of this vital building block, which has no real backup. And to clarify, I was sitting (not running, etc.) and it was working like a crazy person. You don’t want this baby to keel over because of your own ignorant choices. The first question that ran thru my head was "how do I help this nutty organ to have an easier day? I can’t do without it, clearly." If you can’t get your own echocardiograph sometime soon, watch any number of YouTube videos for an idea of what’s going on inside your own chest, 24 / 7 / 365. Then consider a 1-week food audit. 🙂
In Closing, Some Refined Goodness:
Poems and quotes may not be your cup of tea, but I will still risk closing with two passages I have heard my mom say countless times since arriving here. One is by Rabindranath Tagore and the other by Thích Nhất Hạnh
Face to Face, by Rabindranath Tagore
Day after day, O Lord of my life,
shall I stand before thee face to face.
With folded hands, O Lord of all worlds,
shall I stand before thee face to face.
Under thy great sky in solitude and silence,
with humble heart shall I stand before thee face to face.
In this laborious world of thine, tumultuous with toil
and with struggle, among hurrying crowds
shall I stand before thee face to face.
And when my work shall be done in this world,
O King of kings, alone and speechless
shall I stand before thee face to face
Thích Nhất Hạnh
People usually consider walking on water or in thin air a miracle.
But I think the real miracle is not to walk either on water or in thin air, but to walk on earth.
Every day we are engaged in a miracle which we don’t even recognize: a blue sky, white clouds, green leaves, the black, curious eyes of a child — our own two eyes.
All is a miracle.
Have a great summer day… [ do let me know if you want to opt out of these, no worries ]