Adventure #2, as of April 26

Hi Folks,

Here's an update on my adventure back into PTCL-NOS. To acknowledge spring, I will include a few shots of blooms in our neighborhood.

Quotes Floating in My Mind:

“You are only entitled to the action, never to its fruits.”

Bhagavad Gita, chapter 2, verse 47​​

“Life is not always a matter of holding good cards,

but sometimes, playing a poor hand well.”

Jack London, American novelist

"Never postpone a good deed which you can do now,

Because death does not choose whether you

have or haven’t done the things you should have done.

Death waits for nobody and nothing.

It has neither enemies, nor friends."

Indian proverb ( see "This Magic Moment" below )

The highest level of mastery is simplicity.

Most information is irrelevant and most effort is wasted, but only the expert knows what to ignore.

~~~

When you say no, you are only saying no to one option.

When you say yes, you are saying no to every other option.

No is a choice.

Yes is a responsibility.

~~~

You are only as mentally tough as your life demands you to be.

• An easy life fashions a mind that can only handle ease.
• A challenging life builds a mind that can handle challenge.
• Like a muscle that atrophies without use, mental strength fades unless it is tested.

When life doesn't challenge you, challenge yourself.​

James Clear

You know that old trees just grow stronger

And old rivers grow wilder every day

Old people just grow lonesome

Waiting for someone to say, "Hello in there, hello"

John Prine, Hello in There

You cannot give orders to a volcano, the volcano decides.

Dr. Andrei Shustov, Seattle Cancer Care Alliance, commenting on the Federal response to COVID-19

Treating a disease is science, treating a patient is art.

Dr. Andrei Shustov

Thanks You's

• Mom has always been a personality of her own, and her presence for me is peerless. Thank you!
• Same huge thanks to my sisters Susan and Cindy, and brother-in-law Chris, for the questions raised and ideas shared.
• A huge thank you to my extended family and friends for your well wishes and musings.
• A very notable thank you to a group of friends who are helping me cushion the financial stress as the transplant puts me out of work for yet another 12 months.
• A special note to my cousin Lena for pointing out things like John Krasinski's "Some Good News" network.
• Thank you to the tireless and vigilant medical team at SCCA, particularly Team Coordinator Joseph Delos Reyes, RN extraordinaire Beatrice Franco, PA Hematology-Oncology Megan Shelby and Dr. Andrei Shustov
• Last but by no means least, a big thank you for including me in your prayers. It's perhaps the oldest, and certainly one of the most powerful of antigens.

The view on our daily walks
Copyright 2020 Abe Pachikara (click for larger image)

Status

I just completed a PET scan and we have updated our gameplan - see below.

• Tumors… Pretty much gone after 4 rounds of heavy chemo treatment. In all instances the tumors are either not to be found or dramatically smaller.
• Energy & stamina… In addition to the long daily walks, about 4 - 5 times a week I follow along to a 20 min full body workout (poorly, to be clear) and then take a short run (if you can call it that) of about .4 miles. It's pretty unsightly, but it's a start. "Don't let the perfect get in the way of the good" as they say.
• Blood chemistry… It is recovering but very, very slowly. The slow rise into normal ranges is proof of the deep damage to the bone marrow.
• Blood pressure… Looking good.
• Heart rate… Looking good.
• Weight… I am approaching my 165 lb goal - - in this case, the trick is to NOT surpass it. My weight has risen from a low of 139 pounds, to now 160.2 pounds.

Cancer Treatment Gameplan - Any long journey has tunnels…

And this tunnel is a long one…

The PET scan results are good, but not stellar.

• The "SUV" (Standardized Uptake Value) should be less than 2.5 but the tumors in the underarms were 3.1 and 3.8.
• This could be either a) normal if the lymph nodes are responding to sickness, but I am not under the weather; or b) low level lymphoma still persisting. We don't know for sure.

Two pathways exist, each with its own non-trivial risks:

• Proceed "as is" to the stem cell transplant.
• Take time to administer biological drugs, then undergo a transplant.

Proceeding "as is" to a transplant requires starting with a very high-dose of chemo and radiation. High dose = a hospital stay of 3+ weeks. High dose = damage to all my organs. High dose = a longer period of added vulnerability to COVID-19. On the other hand, high dose should wipe out any lymphoma that's present.

• The risk: If the initial dose doesn't eradicate the lymphoma, the malady has free reign on a defenseless body for the following month at least.

Taking time for biological drugs may eradicate any measurable presence of the lymphoma. That lets the stem cell procedure begin with a lower dose of chemo and treatment. Lower dose = an outpatient procedure; I sleep at home at night, not in a hospital room. Lower dose = easier on my organs. Lower dose = less vulnerability to COVID-19.

• The risk: We need a treatment regime that actually works. If the biological drugs fail and the lymphoma grows, the stem cell treatment is "off the table."

Therefore, in both treatment approaches, failure has big implications.

So we are taking 5 actions:

• Biopsy: Tue, 4/21, I had a core needle biopsy to pull samples from right underarm. Why? To do a battery of tests and in about 2 days, know if I still have lymphoma.
• Biological drug regime: Thursday I will start getting a biological drug for 2 cycles of three weeks. Why?
• If there is lymphoma, it has "survived" 2 different treatment regimes (CHOP in 2016, and TEC in 2020) comprising 6 different chemo drugs. It reminds me of an old Timex slogan, "takes a licking and keeps on ticking." The lymphoma could prob take 10x more chemo according to Dr. Shustov and survive. But more of the same would be bad for "the rest of me." The toxic nature of all the chemo treatments is cumulative on our bodies. Yikes.
• To use a biological drug is to shift gears - it is an HDAC inhibitor.
• Try an unproven treatment, perhaps: There was a recent very limited trial that showed promising results from combining a different drug called Duvalisib when combined with an HDAC Inhibitor. If the biological drug I take does not do enough, this may be something Shustov will recommend but it's still early stages in terms of its effectiveness.
• DNA analysis: We'll be analyzing the DNA of the biopsy tissue. Why? It is a long shot - - but we are on the hunt, like the FBI or Interpol. Of 800 essential genes, 5 genes (TET2, IDH1, IDH2, RHOA, DMT3A if my notes are accurate) play a role in suppressing tumors. If we find these are in play, there's a drug that has good outcomes that can help these genes.
• Transplant: We are on "wait and see" until COVID-19 chills out in state of WA, and, to some degree in the US. Sigh…

…but there's one piece of light at the tunnel's end:

SCCA notified me that from the worldwide database of possible donors, not only were there 18 people who may be a match ( "that's a lot," according to Dr. Shustov ), but one has a 10 out of 10 HLA match, has agreed to be a donor, and has been tested for COVID-19. That sounds like light at the end of this long tunnel. 

If you want to be a similar source of light for someone, be a donor. Visit Be the Match, the Fred Hutch website or World Marrow Donor Association.

No such thing as getting too close to a flower, no?
Copyright 2020 Abe Pachikara (click for larger image)

Musings

How drastically will COVID-19 change our lives? From caterpillars to butterflies?

We were in "Phase 1" of life, before COVID-19. Over the next few months we will change, as we finally figure out and settle into a "Phase 2" - - that may last 2 years. When a vaccine is widely available, and the COVID-19 era ends, we'll discover "Phase 3." Everything will change, yet again.

I have visualized our current world as a caterpillar, entering its chrysalis (or many caterpillars and many chrysalis, for the many different situations and scenarios being challenged worldwide). A new world, and our new lives, will emerge from its cocoon, or innumerable cocoons. The new habits may be as unrecognizable to the old routines, as a butterfly is to the caterpillar, no?

From dandelion to amazing puppa

Copyright 2020 Abe Pachikara (click for larger image)

Sometimes, a B+ grade sucks.

When I was in grade school, only one grade was acceptable to me. An "A." It was a loose indicator that I understood the material.

In similar fashion, I was looking for the PET scan to report great results. That would suggest the tumors are so minimal we no longer can detect them.

Alas, such was not to  be. It boils down to a Deauville score - - mine was "partial response 4" - - a good score but not a stellar one. I was looking to achieve a 1, 2, or 3 from this round of chemo. Dr. Shustov indicated that when you have bulky tumors (the one in my left underarm was the size of a large lemon) it's not surprising some of it remains.

But… I am still stunned and dismayed. Hadn't we just delivered a massive pounding to the cancer (and the rest of my body) with 4 heavy cycles of chemo? Think of a large squadron of B-17 Flying Fortresses pounding a target in WWII, or B-52s carpet bombing in the Vietnam War. I am astounded that in the end, some of the mutated malignant lymphocytes still survived. Inconceivable, no?

Sigh. We can only focus on what we control. Yes, a "great" score would mean this threat has passed, at least for now. And that we can choose a less toxic transplant procedure, which is all the more important in a time of COVID-19. I am pretty bummed but less than I expected, as I kept my expectations muzzled. Perhaps our updated gameplan will get to full remission. Let's see, no?

Look up, and what do I see?
Copyright 2020 Abe Pachikara (click for larger image)

Laughable stamina and strength. For me, that is…

On Sunday, April 5th, I resumed a tradition from last summer. Working out. It was pretty funny for me to watch myself. ( "Meta-watching," perhaps?) Particularly compared to last summer. Back then, most days I would follow along to a 20 minute YouTube workout, no problems. About 3 times a week, I then headed out for a 3 mile run.

What was it like on April 5th? The polite answer is "ambitious." More bluntly, "you gotta be kidding me." A clumsy and embarrassing affair. I was so happy no one watched me. Each of the 30 second exercise segments was at least 18 seconds "too long." Lungs heaving. Eyeballs popping. Muscles not just failing, but in outright protest. To my surprise, it was also illuminating - - I learned I have no shoulder muscles. They are in worse shape than my glutes. Pushups were the litmus test. I could get in the starting position, but did I have the strength to lower myself? Nope.

Then came the run. How long? I decided to try to run down the street about 200 yards - - that's right, I am measuring in yards, not miles - - stop, turn around, and run back. Again, not an elegant affair. Tiny strides. No power of any kind. Inhales that pulled in a thimble's load of air instead of buckets.

Nonetheless, getting out into the spring air is sublime. I have repeated this routine perhaps 7 times, with very little progress. But it will change.

Almost jumping jacks
Copyright 2020 Abe Pachikara (click for larger image)

A very, very short run. But run it is...
Copyright 2020 Abe Pachikara (click for larger image)

"This magic moment" may never happen again. Don't wait until tomorrow.

You NEVER know which is the last instance of a particular routine. Our only choice? Act "fully" in the current moment.

A recent example: a few times a week I have dropped the boys off near their high school. My intent: take THE canonical photo of them walking to school. Capture how they chat along the way. How they are dressed. How they are loaded with backpacks and duffle bags. How they are surrounded by fellow students all going the same way. Buses rumbling by, sunrise shining through, and a morning rush crescendo-ing to the 8 am start time. One Friday I had in mind to take "that shot" but did not push myself in that moment.

To date, I did not achieve this mythical photo. "Next time," I would say - - we have the rest of the school year to get the right shot, right?

Perhaps "Next time" is a terrible mindset? It makes us soft in the moment. We don't bring our best game to bear. One alternative: a "Never again" mindset. As in, we are not repeating this moment, or coming back here, anytime soon. Think about vacations. We apply a "Never again" attitude. I know it does something different to my head. I think of our trip to Vietnam, or any other notable destination. The only phrase in our heads and hearts is "Never again." The upshot: we take in every moment - - be it a walk, a meal, or a photographic moment.

As for that perfect shot of the boys heading to school… you know the outcome. That very day, my fair State of Washington declared schools would close for 3 weeks. All instruction would occur online only. This was followed by news that school would occur online for the rest of the year. And Paul will graduate so there is no future school year to get that photo "next time."

Sigh. Do it now. Whatever it is that's important to you.

Look up again!
Copyright 2020 Abe Pachikara (click for larger image)

Free Courses from Coursera! And Content from Netflix

COVID-19 means more time on our hands. What to do with it? Here's two choices that are promising. For a limited time, Coursera is offering free certificates for 85 courses. Here is the full list, instructions with to access them. And in similar stride, Netflix has enabled free access to some shows by putting them on their YouTube channel. Nice!

Prescient Passage?

I am not one to make 1:1 connections between a religious passage and the current world (frankly, I have enough struggles just "acting like Jesus" to quote my Dad, and with the core tenets from the established religions)… But, on a recent walk, one of our neighbors shared the passage below. What struck me was the 3 calamities cited and how they map to today's world.

“When I shut up the heavens so that there is no rain, or command locusts to devour the land or send a plague among my people, if my people, who are called by my name, will humble themselves and pray and seek my face and turn from their wicked ways, then I will hear from heaven, and I will forgive their sin and will heal their land.” — 2 Chronicles 7:13-14

3 phrases jumped out at me…

• "no rain" - is that what caused the massive fires in Australia?
• "locusts" - is that referring to the 200 billion now in Africa?
• "plague" - is that COVID-19 engulfing our entire Earth?

Perhaps now is when we take a moment to pause, reflect and retool our ways. Not that we have evil ways but gosh life is pretty blustery. All too often, we carry on at a breakneck speed, no? If you drive a car like that, you're bound to bump into something. Our current moment has allowed for the land to heal -- both in a literal sense - - see how pollution is clearing up - - and in terms of our day to day routines.

Battle Gear

All the discussion of PPE brought a memory back. In early January, I was admitted to UW Med Center under the suspicion that I may have some manner of contagious "herpetic response." It turned out to be nothing more than mucositis which is not contagious. But in the meanwhile, I was placed in a "reverse pressure" room and all visitors had to be equipped accordingly. Including Mom. Today, I would not have been admitted - the focus is COVID-19. I cannot imagine being rejected by the hospital, going home to live thru my miserable state without help from skilled staff. It's such a new world for all of us. Pray for the sick folks who need attention despite COVID-19.

Protection in today's world...
Copyright 2020 Abe Pachikara (click for larger image)

Working at home, with kids present, around should earn overtime pay

I was on a call with one of my sons' teachers to share tips about using Microsoft Teams. I think I learned as much as she did. But not about Teams. For me the lesson was a re-introduction to the distractions and stress of working from home with kids orbiting continuously. Her young daughter interrupted on a regular basis, her best friend had just been furloughed for 90 days, her lesson plan needed to be 100% online with less than a week's notice, and her primary teaching tool was something completely new to her. All her colleagues were in a similar boat but didn't have the usual in-person interactions to commiserate and iterate together. What a hot mess.

At the end of the call, I remembered when Paul was a toddler…

I would be up very early each morning to take care of the boys and use the time to catch up on work. When he awoke, he would amble over in a fuzzy onesie, wearing a big grin. After getting him a milk, he insisted on sitting on my lap. Picture a delicate mop of baby hairs obstructing my laptop screen. The situation takes touch-typing to a new level. Once he was done with his milk, I could buy some time by handing him a small, chunky "DK Publishing Visual Dictionary" to thumb thru.

One day, my toddler son made a big effort to turn around in my lap. Wearing a triumphant smile, he handed something to me. A gift? How nice! I stopped what I was reading. It was a tiny thingamajig. A letter "P" - - where did he get that? Then it became clear it's some kind of tile that has the letter P on it. He's babbling in a melodic, excited way as I look at this trinket. Oh no, it all makes sense. I look at my keyboard: like a tooth knocked out of a boxer's mouth, the keyboard has a concise gap between the "O" and the "[" keys. His baby hands were small enough to pry out a keyboard key. The letter P. My son slides out of my lap, still jabbering on about his accomplished mission, takes the 2nd sippy cup of milk to his little brother, and goes back to bed. My email will need to wait as I figure out how to return this esteemed gift to its original location. ( Luckily, it snaps back into place - how ingenious. )

A whole day of such distractions? Sheesh, that's a different story altogether, no?

Hard to imagine productive work if the boys were this young.
(Sidd ~few months, Paul 1 1/2 years old)
Copyright 2020 Abe Pachikara (click for larger image)

Life carries on

Yes there's maladies that change our lives in huge ways. Be it cancer, COVID-19, or one of many others. But it's still only a part of our existence.

Hard as it may be, celebrating these "other parts" of living is vital. Each includes moments that only come by once. In our case, my older son, Paul, has heard from the 4 colleges he applied to (he had a 50% success rate and he is elated of where he can choose from), he turns 18 in a couple of days, and will take his driver's test too. So…. we had a grand feast yesterday. The chef was Mom, the sous chef was Sidd. The featured items on the menu? Cutlets. And of course, Biriyani. Both reviewed and approved by Paul.

The first toast? It was Mom, declaring "To life!" 

Let's "Coronavirus" together

For all of us life is both terrifying and amazing. On the one hand, COVID-19, Lymphoma, other maladies & calamities. On the other hand, family celebrations, friendships, humor, whimsy.

The quarantine is a great chance to flex our muscles, dial up the amazing, dial down the terror. We create magic when we are kind and connected to our physical and virtual village of neighbors, family and friends. So make time, say hi (by phone or computer) and check in on each other. For all parties, the kindness will feel good and not be forgotten.

Mom and I wish you the best - stay safe!
Copyright 2020 Abe Pachikara (click for larger image)

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