Here's another check-in about my "Unintended Journey." Today, Friday, was the 4th full blown infusion of chemo (C.H.O.P.) and trial drug.
Thank you's are the important place to start…
- Again to my parents who have been watching close over the treatment, running the household and raising clarifying questions.
- To my sister Cindy, who helped me to transfer old videos while here, and now gone back as the UMich school year begins soon, so she needs to be ready and prepped for the courses she is running.
- To my sister Susan, now in town for the next cycle, just in case things go wonky.
- To those who paid visits to my place (in the carbon form, in person) - what a treat! It certainly made me realize how the wild dips in immunity have steered me away from much any gathering. Again, like much of life, timing is key. It was terrific to meet up with Anita and Sanket, and have dinner with my cousin Abe and his wife Michelle (of some humor to me, I have 5 cousins named Abe Pachikara).
- Also meeting in person outside the fishbowl that is my house was a small return to normalcy. Three meandering conversations with Frank, Suzy and Scott were a refreshing change.
- Thanks in a big way to my colleagues who keep replying to a shell email I set up, with the whimsical subject line, "I was a bit bored so…". And of course the texts and calls are terrific, even the butt dials (Given my name starts with an "A" followed by "B," "Abe" is near the top of many address book lists).
- Thank you for the books, they keep coming in - - I have at least 3 years of reading given my ponderous reading rate. Maddening is that some of these Amazon deliveries come with no info about the sender; example is yesterday I received "Art of Cancer: Poems" - - unfortunately, who sent it is a mystery.
- I am learning what a tried and tested Care package looks like from my cousin Serena and family, who have now sent two: 1) a well-crafted set of cards made from scratch, 2) some other manner of art or craft, 3) and interesting reading (this time it's Harry Potter and the Cursed Child written as a play evidently)
- Cheers to my cousin Lena for sending an embroidered cloth of Irish toasts. I realized I know no toasts but they are so very useful, no?
- As always, to the team at the Seattle Cancer Care Alliance who keep an upbeat tone while being dead serious about doing things right. For example, triple checking the name on my wristband, to the computer record, to the info on the bags of chemo. It certainly dials up one's confidence and lowers your stress level about your care.
"…there is nothing either good or bad but thinking makes it so." Hamlet, Act 2, Scene 2
- 3 rounds done, 3 more to go. #4 is Friday.
- Immunity is not dipping as wildly as after round 1 and 2, perhaps due to the Neulasta shots.
- RBC counts and related iron are declining - I am at times anemic. Blood pressure is also down. In the scheme of things, both are a detail.
- Weight is holding firm - a good thing as it indicates the body is functioning well despite the chemo. Selfishly (even foolishly,) I was originally hoping this would be a path to losing 10 pounds. Vanity & logic do collide so often, no? Again it proves that shortcuts are usually not part of the long game.
- So that I fully appreciate the value of my health insurance plan, I am tracking costs as close as I can. $41k is the current tally but this excludes probably +$20k covered due to being in a drug trial. One more reason to say thanks in my daily prayers.
- Forward movement - from what I can tell the original offending tonsil that signaled a problem continues to recede based on the photos I have taken. It's only a small part of the lymphatic system to be sure, but a somewhat useful indicator.
- Energy remains low, particularly the weeks after the chemo. I have stopped running altogether but keep up long walks and a hilly route to push me. I did try running with Paul as he prepped for high school cross country but he kept improving (the nerve of him, no?). Even a head start was not enough after a while.
- Abundance can undermine urgency. My parents came storming into town like the cavalry in a Western movie, and were determined to keep things in order until my treatment was done, 4 months later. Life changed in so many good ways. One error - I lost any urgency to undertake anything non-trivial with them as there was always "tomorrow," right? Then came the need for them to go back, briefly of course, as my dad (now nearly 81) has to check into his own health. The upshot - they won't be returning any time soon due to follow-up appointments. My dismay is beyond words here - - a sobering realization penetrated me all too late. Even though cancer SHOULD have hard wired urgency into my constitution, it doesn't work like that. I had settled into the opposite without even truly realizing it. Sigh. In real ways, urgency is a muscle like any other skill or mindset - you need to work it, look at it in the mirror and be ready to course correct at any moment.
- Less obvious selection criteria. I didn't choose to be in Seattle because it has tremendous cancer care. Nor did I choose my house due to the great neighbors. But my day to day life has been deeply enriched by both factors. In truth, it is largely impossible to weave in such criteria in advance. Luckily, the hand of God silently at work takes care of these vital details - a great point raised by my good friend Scott.
- Lourdes every day. Mom brought a pint-sized jug of holy water from Lourdes that she has been saving for 5 years for the "right time." Evidently, now is the right time. Her guidance, "every day when you take a bath, put some of this on your head and pray." And I do, in part as I believe and have seen miracles, and also because any chance to say another prayer is a good thing, no? (I do feel that a homeless shelter or other such place could be better served by this, but it would be a super awkward act of re-gifting. :) )
Trivia Question: Why do my hips ache after a walk?
Answer: It's the elevated activity in the bone marrow created by the drug Neulasta
- The body is an amazing, infinitely intricate maze of Dominos. I better understand why my father, a retired surgeon, is still so fascinated by anatomy: I now see the cancer treatment is akin to a person blundering in-between intricate sets of Dominos and inevitably tipping off a variety of them in unintended ways. Suddenly the list of "possible side effects" I hear on drug ads are realities, like it or not. Examples I have observed: my finger nails are dark at the base, and my tongue is oddly discolored; thumbs and fingertips are a bit numb; the chemo elevates sensitivity to the sun, a bit of a shame in the summer; dizziness if I stand up quick - an upshot of the anemia; eyebrows are thinning. So far, all of these are teeny tiny inconveniences. To me they emphasize that while medicine works wonders, there's certainly upside to be had.
- Dialing down the bachelor look. I'll admit being a single dad can result in bachelor tendencies. Meanwhile, moms are well, moms and a long stay is a rich opportunity for deep observation and steady nudging. In the first few weeks, the question was always, "why don't you have this?" about some aspect of my place, and my answer was that function trumps style. Well, let's just say style started winning. What to say? It is a good problem when people care, and it's a better living experience now.
- Treating the unknown as truly unknown. At first, all I knew was "you have lymphoma." Where, how long, how bad, how fast, how many nodes were all a mystery. Worse yet, it took a full four weeks before we had a clear sense, an ocean of time for the mind to play games. Friends played it down, and reading anything seemed to play it up. The pull to the pessimistic side was remarkable. I realized this was dangerous, effectively moving out of the unknown into a perception of the known. So I repeated a protective mantra of "we don't really know yet, do we?" which certainly was helpful.
- The grey hairs are the fighters. As mentioned previously, bald guys are pros at noticing hair loss. Prior to all this, I probably had an even mix of grey and black hairs. Now it is just grey hairs, (an albeit scraggly, scrappy crew). Perhaps the logical reason is black hairs grow faster so are victims to the chemo in greater numbers. Or perhaps, those old bastard grey hairs just fight a lot harder, no? :)
- Ariam's pre-emptive strike. One bad outcome of infusion Round One was a bout of mucositis. In my mouth, it was just old fashioned pain for a few days. After-the-fact remedies did little to help. Then for Round Two, a seasoned nurse originally from Eritrea, Ariam, asks me in a matter-of-fact manner, "so you want a strawberry or lime frozen popsicle?" I am puzzled. Why would I want this, I ask. "Well your taking Folotyn, so we need to stop the mucositis before it starts, right?" I am more puzzled, asking, how can we do that, doesn't it just spread across the body and trigger the mucositis? She is SO VERY tickled by my response. "Come on, use your logic. If you eat popsicles, your mouth gets very cold. That means all the capillaries shrink in your cheeks. So very little Folotyn will get to your mucosa in your mouth." She walks off to get some more items, chuckling. It's that simple? Really? 4 days later I get my answer: yup. Simple action taken early beats a lot done late.
- Get help for your help. My parents and sister had been in town and certainly made my day lighter. Yet helping out others can be taxing and pretty boring after a while. The remedy: invite more family members for a few days: it brings a gust of new energy, conversation and relief for the relievers.
- Trust versus cause for worry. When my boys, 13 and 14 years old, fell behind on their summer goals, I got worked up. In truth, I am reflecting on myself in some poorly articulated manner, and then worrying it will replay for them. I am not accounting for the unexpected wins like the time spent with an array of family. And, it's summer, the sun is out, and they are young teens. Isn't goofing around the first goal, perhaps?
- Watching old videos is nearly too much. I just transferred old videos to my computer. Each was a treasure trove I had long forgotten. My conclusion: shame on our brains for not retrieving nuance effortlessly; life would be continuously recharged with these memories of foolish expeditions. Each 60 min video was akin to forgetting parts of a stand-up routine before the show is done. "I have to remember that one" is a recurring, if failing, mantra.
In Closing, Some Refined Goodness, Then A Chuckle
Pictures, videos and other people's words are a better way to close. Here you go…
Thich Nhat Hanh
Waking up this morning, I smile.
Twenty-four brand new hours are before me.
I vow to live fully in each moment and to look at all beings with eyes of compassion.”
From A Psalm Of Life - Henry Wadsworth Longfellow
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.
Ode I. 11, by HORACE
Leucon, no one’s allowed to know his fate,
Not you, not me: don’t ask, don’t hunt for answers
In tea leaves or palms. Be patient with whatever comes.
This could be our last winter, it could be many more,
Pounding the Tuscan Sea on these rocks:
Do what you must, be wise, cut your vines
And forget about hope.
Time goes running, even as we talk.
Take the present, the future’s no one’s affair.
A good Irish Toast
May the Lord keep you in the palm of His hand and never close His fist too tight!
A wig? Seriously? The SCCA sign said "Ask about our wig program." Hmmm, I do have hair loss, so I called them. I did clarify my situation - yes, a LOT of the hairloss did happen a long time ago unrelated to the lymphoma, but some occurred as part of the treatment. Upshot: now I have a hairdo I can put on any time. Once again, I have hair in my eyes as was the case in my teen years. Who says crazy hairdo's are only found at photo booths?
My sister Susan arrives at SeaTac airport
© 2016, Abe Pachikara (Click for larger images)
Going into the weekend with a smile, here's a favorite, foolish 30 second scene from the US version of The Office, where Dwight Schrute gets fired up on rock and roll before sales calls.
Have a tremendous weekend and Happy Labor Day in the US!