Here's another check-in about my "Unintended Journey." Today, Thursday 9/22, is the 5th full blown infusion of chemo (C.H.O.P.) and trial drug.
Thank you's are the important place to start… (it's easy to assume the good things in life, no?)
- To my sister Susan, who created an array of healing-oriented, delicious masterpieces, like homemade beef bone broth used as the base of soups and other dishes.
- To my mom and dad who are back home but engaged every day without fail into what is going on, and choosing to stay in the fray even as he addresses his own health. My dad redefines the "happy warrior."
- To my sister Cindy, juggling her faculty responsibilities at UMich and staying engaged.
- For the many folks who include me in their prayers - that is a blessing unto itself. Just 4 examples:
- To Ellis Uncle and Mercy Auntie for coming over from Cleveland for round 5. Their visit is tremendous in and of itself as they are full of life in many different ways, and to do so in sync with the infusion is even better.
- To Biby Auntie and Jimmy Uncle, and my cousin Abe and Michelle for meeting up in person, timed in between my dips in immunity.
- To colleagues and friends who send a note to check in and share thoughts, or call to shoot the breeze like Wendy did a few weeks back.
- To Sebastian, Nimish and Shiv for the Skype calls filled with meandering musings and the occasional WAGNER (Wild Ass Guess, Not Easily Refuted). "Technology" to me is defined by the reaction, "how did we do this before [insert invention] came along?" In this case, video calls spanning Munich, Singapore, Atlanta and good old Bellevue WA.
- Meeting, in person that is, with friends and colleagues like Laura, Prashant & Kelly.
- To my cousin Lena, so tickled by the notion that mom is "dialing down the bachelor" in my place that she couldn't resist sending me an elegant holder for cocktail napkins. Certainly was not on "my list." :)
- To Priya and Bijoy for the cooking class at their place to teach how to make an overly spicy South Indian fish dish I love - if you need your Omega 3 fatty acids, why not bring in some thunder and lightning?
- To Mithu and Luis for a fabulous care package containing not only books but a coloring book and origami paper. Nice.
- As always, to the team at the Seattle Cancer Care Alliance who remain vigilant and upbeat.
- 4 rounds done, 2 more to go. #5 is today, Thursday.
- Last week, we ran a "diagnostic CT scan" where they take an image every 2 millimeters from ears to knees. Wow. That's a lot of photos. It shows steady progress.
- White blood cell count is high (a good thing) due to 7 daily injections of Granix, the generic version of Neulasta. (I do dread needles and poking myself, a useful disincentive in an age of opioid epidemics.)
- But immunity is still poor as the lymphocytes are low given the chemo is attacking cancerous lymphocyte cells, bringing collateral damage to the whole cohort. As Dr. Shustov explained, "your lymphocytes are the atomic bombs in your immune system arsenal, the white blood cells mean well but… they are like soldiers with poor training." :)
- RBC counts and related iron continue to decline - I am anemic.
- Weight is rising slightly - certainly helped by all the home cooked food from my Susan played the largest role.
- The "deforestation" my son Paul whimsically coined does continue: my eyebrows are steadily fading away. In the scheme of things, it's barely a detail. When I am at SCCA, I see patients who are contending with the effects of far stronger treatment.
- We are at $97k as of late Aug bills. Lord have mercy. More worrisome: how do you get treated for things like cancer if you do NOT have insurance? Insurance coverage is certainly in my list of daily thank you's.
- Push back: Premera informed me they are not paying for the 3 rounds of Neulasta shots taken so far which Wikipedia indicates has a rack rate of between $5k to $8k per dose. Not sure how this was not nipped beforehand - healthcare is a financial minefield, made worse from the stress of the sickness itself. Stress squared? The SCCA team is inquiring into this issue.
- What will be my new "set point?" I am pondering life going forward - what will materially change? For how long? In weight loss, your "set point" is your weight and health levels when you have graduated from a program. Success is defined by the % of participants who are at the same set point 2 years later. The dismaying truth: many popular programs have a 3% - 5% success rate. Or as much as a 97% failure rate. So what will my post-cancer set point be? How close will I be to this anchor point in Dec of 2018?
- “Like Water for Chocolate” moments. Biby Auntie brought over fried jackfruit and a sweet halwa made from the same - no easy task if you know how to prepare this. Read: it's a royal pain in the butt to make. And all of it packaged with her trademark, low key smile. That's love, at its best. Each portion should be eaten one tiny bit at a time, like it is a national treasure, not wolfed down. It is so easy to not fully appreciate how these foods are crafted. That's why when feasible, I freeze any such delicacies and dole them out to the boys like they are congressional medals of honor. :)
- Mastery is when you only see options. My sister Susan was here - she studied at Kendall College of Culinary Arts, translated her skills into great blog posts like this one, and the outcome is akin to a broad, foodie vocabulary. She made a beef bone broth for the nutritional merits and on various days would just take a portion, and add a mix of spices, and vegetables or lentils to make a remarkable soup. Same with a myriad of dishes each day. Throw this together with that, and the other. Voila, hearty meal. How it all occurred is still a foggy blur, but certainly, I have a long ways to go.
- Celestial dominoes and the overstuffed jacket. Ten different systems in our bodies intricately collaborate, akin to a symphony by Beethoven, but on an exponentially grander scale. In my own head, after experiencing the side-effects from 4 rounds of infusions, my view is simple: consider a room with many complicated, inter-woven tracks of delicate dominoes of different sizes & colors, gently tumbling and creating lyrical tones as they do so, then being reset for another round. One of the sets of dominos tumbles oddly and out of turn. Enter into the room a man on a mission to fix THAT specific set of Dominos. He's bulky (think of Hodor from Game of Thrones), and worse yet, in an overstuffed full-length winter jacket. Well intended? Yes. Nimble and resourceful? No. He fixes the target problem, but in the process, creates uncounted other ones, some to be solved over time by more Hodors, some to never be the same. Medicine, along with nutrition, meditation and physical activity, is making huge strides, but the challenge is steep and mysterious.
- Mucositis, Part 1: The sublime design of the tongue. My dad, who is endlessly fascinated with our anatomy, described the way the tongue is like no other muscle in our bodies. It can go anywhere in the mouth, has complete freedom, due to a symphony of 8 muscles.
- Mucositis, Part 2: Bludgeoning the tongue. The mucositis only affected the mucosal lining of the tongue - the surface. But it was akin to a depth charge detonated at the left side of the tongue, unfurling something akin to barbed wires deep within them. Any time these muscles moved, the barbs pulled. And movement was the norm. Akin to a soccer team hard wired for a game, or soldiers in battle, the tongue only knows action. Talking. Swallowing. Spitting. Shuffling food being chewed. "Stop" is not a command it understands with ease. The only solution: shut my mouth tight - there's very little extra space left for it to move around. :) So my days are that much more reflective, a good thing, no?
- Mucositis, Part 3: Consummate collaboration in the mouth. The pain and discomfort has made me abundantly aware how the mouth functions on a minute by minute basis. It truly never rests. And each part does a different role, with pure teamwork of the kind found in 2-on-2 volleyball. If just one area is impacted, most of the fundamental actions are thwarted. In round 1, it was my throat. Now after round 4, it's the tongue. The surprise: you cannot spit without using your tongue - the result is a ridiculous drooling scene that could be from a Monty Python movie. I am in awe of how the body functions.
- Mucositis, Part 4: Good health is akin to an hard working employee that the boss doesn't notice. The occasional malady makes one aware that our healthy bodies do work tirelessly, purposefully and profoundly productively. But all too often, when it all works, we don't notice. It can take a little derailment to help create a little "body appreciation moment."
- Teaching Happiness: I am taking a Coursera course called "A Life of Happiness and Fulfillment" and I can see bad habits I have had for a while. I also wonder about why I am looking at this now, as opposed to decades ago, even though it is such a basic topic.
In Closing, Some Refined Goodness
If you think you are too small to make a difference, try sleeping with a mosquito.
Logic will get you from A to B. Imagination will take you everywhere.
William Blake, Eternity
He who binds to himself a joy
Does the winged life destroy
He who kisses the joy as it flies
Lives in eternity’s sunrise
Henry Wadsworth Longfellow, excerpt from A Psalm Of Life
Lives of great men all remind us
We can make our lives sublime,
And, departing, leave behind us
Footprints on the sands of time;
Let us, then, be up and doing,
With a heart for any fate;
Still achieving, still pursuing,
Learn to labor and to wait.
At SCCA with Ellis Uncle, © 2016, Abe Pachikara (Click for larger images)
Have a tremendous day,