Adventure #2, as of June 12

Hi Folks,

Here's an update on my adventure back into PTCL-NOS.

Quotes Floating in My Mind:

Sometimes things have to get worse before they get better.

Marilyn Ferguson

Tender love and care toughen you up, because they nurture and strengthen your capacity to learn and adapt—including learning how to fight, and find your feet, to hardship later in life.

Noam Shpancer, Ph.D.

Your goal is to get busy living.

Even when the body says no.

My cousin Laly

Most failures are one-time costs.

Most regrets are recurring costs.

The pain of inaction stings longer than the pain of incorrect action.

James Clear

Life is too short to wake up in the morning with regrets.

So, love the people who treat you right, forgive the ones who don't and believe that everything happens for a reason.

If you get the chance, take it. If It changes your life, let it.

Nobody said it would be easy, they just promised it would be worth it

Dr. Seuss

"Each second we live in a new and unique moment of the universe, a moment that never was before and will never be again. And what do we teach our children in school? We teach them that two and two make four, and that Paris is the capital of France. When will we also teach them what they are? We should say to each of them: Do you know what you are? You are a marvel. You are unique. In all of the world there is no other child exactly like you. In the millions of years that have passed there has never been another child like you... You may become a Shakespeare, a Michelangelo, a Beethoven. You have the capacity for anything. Yes, you are a marvel. And when you grow up, can you then harm another who is like you, a marvel? You must cherish one another. You must work - - we must all work - - to make this world worthy of its children."

Pablo Casals, on being unique:

People who say a criticism write it in water.

People who receive a criticism carve it in stone.

Unknown

Feel the rain on your skin

No one else can feel it for you

Only you can let it in

No one else can speak the words on your lips

Drench yourself in words unspoken

Live your life with arms wide open

Today is where your book begins

The rest is still unwritten

From "Unwritten", Natasha Bedingfield

Smilin' at the sun.
Copyright 2020 Abe Pachikara (click for larger image)

Thanks You's

• Top of the list, as per the usual, thanks to Mom for her bias for action, so that house, the boys, the roses, and myself, all are moving in the right direction.
• Big, big thanks to my sisters Susan and Cindy, and brother-in-law Chris as we chart out the potential summer treatment regime.
• A thank you to my two boys for schlepping around, completing exhausting errands on top of an already desultory ending to the school year.
• 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 upcoming transplant puts me out of work for yet another 12 months.
• Thanks to Davis Uncle for hunting down useful info about Duvelisib, a new part of my treatment regime.
• Thanks to my cousin Niseema and husband Sam, for the runs to CostCo and local Indian food stores.
• 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.
• Thanks to Mom, my sisters, aunts, cousins and buddy Pat for meeting up for a daily Rosary. It's a key part of my treatment regime.
• 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.

Up early in the morning.
Copyright 2020 Abe Pachikara (click for larger image)

Status

Since I last shared an update, we have gone thru one set of drugs and ditched it for another. Lots of activity.

• Tumors… They continue to wage a determined battle. The only entities more persistent are the SCCA team, and myself.
• Energy & stamina… Steadily declining - I can feel it on the uphills of my walks. Yet I can still muster 2 1/2 miles so I am less worried.
• Blood chemistry… Generally in the normal range. Immunity factors continue to hobble along.
• Blood pressure… Rising a bit.
• Heart rate… Back up in the ~110 range. Hmmm…
• Face geometry… Lopsided, again.
• Weight… Slowly trending back up. From a starting point of 172, to a low of 139, I now hover around 163. At least, it is not dropping which was my greater worry in the past few weeks.

They only get prettier the closer you get.
Copyright 2020 Abe Pachikara (click for larger image)

Musings

The Malady Strikes Back

When last I wrote, my tumors were raging back into prominence. The new plan was 2 full cycles of two "biologicals" to help secure oncological order:

• First, 7 consecutive days of Azacitidine, which had a vivid effect. My tumors' growth stopped in their tracks.
• Second, 3 Mondays of Romidepsin. But the malady ignored this drug. I saw the tumors begin to bloom again. And fast. Uh oh… I was shining Batman's signal for help bright in the sky. Again.

We cancelled the 2nd cycle of Aza / Romi. Time to try fall back on our first "backup" - - a pretty new drug called Duvalisib. It has the status of "orphan drug" - - the FDA provided financial incentives for its development because it treats a rare disease with limited business value to the drug makers.

So what is Duvelisib? Per Lymphoma News Today, this drug blocks the activity of two enzymes that enable malignant B and T cells.

I keep my expectations at bay - I don't need or want the emotional swings from an outcome out of my control. To be sure, a lot rides on the success or failure of this drug.

• If Duvelisib succeeds and puts the malady back to remission, then we get to undertake a less harsh transplant procedure. A lower dose of chemo. Little to no total body irradiation (TBI). Less damage to my body. An entirely outpatient procedure. Yes!
• If Duvelisib fails, we "fill the gap" with the usual thunder and lightning: high dose chemo and total body irradiation. That pairing will damage my organs; and mean more extensive Graft vs Host Disease afterwards. An in-patient procedure with me & my body on life support for 2 - 3 weeks. A harsh journey, indeed.

Under my breath, I chant, "Go Duvy! Go Duvy… "

Another great neighborhood.
Copyright 2020 Abe Pachikara (click for larger image)

Duvelisib = Relief Pitcher

Oddly, the paperwork indicates that this new drug Duvelisib is used only after other regimes have failed. It is akin to a relief pitcher in baseball, eh? I wonder why? Hmmmm….

Undulating, Part 1
Copyright 2020 Abe Pachikara (click for larger image)

Spear? Phaser? Stun Gun? Water? Electric shock?

I believe cancer treatment is perhaps as simple as choosing the right weapons.

What will you hurl, poke or otherwise apply at the opponent? And cancers have an ingenious way of rolling with the punches. They take a beating from your weapon of choice, retreat, seem to go into a period of introspection (it may be too much to say greater self-awareness, but, I don't know) and emerge mutated and smarter. The "old" weapon has failed to have a lasting effect.

What we need is a weapon that delivers a "lasting effect." That is, at least 5 years of remission. Plain and simple.

Picture going into a cage match. Your opponent is T-Cell Lymphoma. Someone whispers in your ear that "the last guy to beat this bum used num-chuks." So you pick up some num-chuks before entering the cage. A crazy, frenzied, wide-eyed battle ensues. Num-chuks work this time around - - but only for a bit. When you stop battling, your opponent is visibly healing and getting up to come after you. Like one of the Terminator robots.  Sheesh, what's going on? You need to grab something else. And quickly! Someone hands you a spear. And a concussion bomb. They don't work. Remember, we are looking for a "lasting effect." Uh oh. You try boiling water. Leaning on your creative side, you grab a simple blanket and a baseball bat (Tony Soprano may be proud). No? Okay, then a bright light. Then a Star Trek phaser. Followed by a Gatling gun.

No? Seriously? Shit. Shit. Shit. This opponent keeps getting back up. Oh man, this is going to be a long match. 

There's only one round. And it ends in a consistent, clear cut manner.

Painted by the sunset.
Copyright 2020 Abe Pachikara (click for larger image)

The Canary in My Coal Mine

I am happy to have personal "canaries in a coal mine" to help me see my cancer more clearly.

As background - - the more general term is "Sentinel Species." Historically, a sentinel stands and watches over a problem area. Sentinel species were animals we used to detect if there was a point of risk to humans. Different animals for different warnings. To detect carbon monoxide in coal mines, us humans used canaries. For air pollution, bees. Bubonic plague, rats. West Nile virus, crows.

My "canary in my coal mine"? I have two.

First, a distinct tingling in my underarms. When my cancer empire was at its height, my underarms tingled all day long. That, even as they hid the largest and perhaps most aggressive tumor - - the one I called "the Death Star" as an homage to Star wars. The right underarm housed "Junior" - - a slightly smaller tumor. The tingling stopped when drugs succeeded to contain my cancer. I think it is nerve endings pinched when the tumor grows.

Example: My tingling subsided during the TEC chemo regime. 3 weeks after the  chemo stopped, the tingling was back. When the Azacitidine began, the tingling diminished but did not go away. Nonetheless, nothing was growing after we began the new regime. Then, between dose 2 and 3 of Romidepsin, the tingling returned, big time. Throughout the day. Think of a neighbor who makes uninvited visits, says some niceties, and walks out. And returns in 30 mins. No pain. Just oddness. Hmmmm…

The second canary? Mom. I just have to look at her face as she looks at my face, and I can see that something is amiss. Reading this canary is a bit trickier as the whole reason she is here is that something has been amiss since November. Mom has bursts of worry unrelated to the malady - - for example going for a walk in the chill air will trigger "a look." Yet, akin to my tingling, I notice when the level of worry adorning her face becomes more pronounced. The worry morphs when it's not about the rain, the cold air, etc. but about the lymphoma. Like going from a thin layer of makeup, to a Kabuki mask. At that point, I see nothing subtle. It makes sense too. There is few things as unenjoyable as being the parent of a child gripped by a malady, no?

My canaries are not worried about being polite to me. Or the medical team. Or finding the right time to chime. They just do…

Inspecting everything and everywhere.
Copyright 2020 Abe Pachikara (click for larger image)

The Plastic Nature of Our Faces, and Bodies

In losing 33 pounds, my face took on a lean look. Frankly, I didn't mind. I've been looking for my cheekbones for years. I parted ways with "angled" and "chiseled" when I graduated from U of I.

But I am now in a very different place. The lean look is replaced by an odd geometry. A tumor by the left ear has given my face a distinctly leftward lean. And a much larger tumor under my right jaw extends my face in the opposite direction at the same time.

Evolution.

Copyright 2020 Abe Pachikara (click for larger image)

The odd shape of my face - - right now - - reminds me of "Pouch." He was one of the bad guys in the Dick Tracy comic strip I used to read as a kid. The backstory goes that Pouch used to be extremely obese and a circus attraction, but then he lost his weight, lost his circus job and went into crime to pay the bills. And his face had folds and wrinkles where he hid jewels, contraband, etc.

With my closest buddies.
Copyright 2020 Abe Pachikara (click for larger image)

Why Do We Pray?

I wonder, why do I pray? The question arises every day when we meet to say the rosary. And when I am alone and pray at the beginning and end of the day.

I am also curious - - what does God want me to gain from my prayers? Does God care, or want, me to pray?

All too often I am praying with a simple intent in mind: I want a celestial cavalry to come in to crush this stupid cancer. That has the simplicity one expects from a 6 year old, no?

But I wonder what does God want? What's he looking for me to gain from the prayer? Perhaps it's a deeper awareness of life? Perhaps God is less concerned about individual items like cancer, disease, pestilence, disasters, war, unemployment, a new Xbox, dying and death, or our successes. What if God's hope is that we better know all about life? How good life is, how colorful, how fleeting, and how terrifying? Perhaps a deeper view of such nuances help make external factors like cancer more trivial, or at least a little less significant.

I don't know…

Organic tower.
Copyright 2020 Abe Pachikara (click for larger image)

We Don't Plan Our Passage

An earth shattering event occurred in the life of a friend from my MSFT days. This past week, his healthy & strapping 18 year old son passed away in his sleep. How is this possible? Just when I am lulled into thinking there is a rhyme and reason to life, I am re-educated, by life itself. One of the few truths is "now" and "today." Even yesterday is a bit of a mirage in terms of my recollection of what exactly happened, versus yours.

Yes, I have cancer, but I've also had the sublime gift of many rich experiences over several decades. I can laugh at my malady as it's "too late" for the illness to take those away. When I hear of a young human who is gripped or overtaken by an ailment or other event, I feel many precious future moments being plundered from their timeline. And I feel very low.

Ministry of Silly Walks

This past Friday was one of the trippiest, surreal, moments of my life. Keep in mind, it was "day 1" of the new drug too.

Again all things begin with assumptions. I assume I will always be able to walk. Smoothly. Without event. And with full control over my legs, my stride, my gait, etc.

The last mile of our normal 2.5 mile route was hard to describe. What I experienced made me think of Monty Python's Ministry of Silly Walks skit... 

• My legs took odd strides. At times, they were too straight, then too bent, & all other manner of action in-between. 
• My left leg crossed over my right leg. Again. And again. Then the right did the same so that I was crossing over myself like a fashion model with an overly dramatic runway walk.
• Resting more during the walk helped a bit as did taking much smaller strides. 

Never have my legs ignored orders. I watched in a combination of puzzlement and mild terror. What the…? Will the same happen to my arms and fingers?

I worried if Mom would notice and then worry. I did not want the Kabuki mask of concern to return to her face. Then she asked, "why are you walking that way?" So much for secrets, eh?

Later that night I experienced some slight loss of control in my hands. SCCA indicated later that since it occurred on both sides of my body it's probably not related to a stroke or other such neurological event. Rather, my body may have been adjusting to the new drug, Duvelsib, introduced that same day, in addition to the presence already of Azacitidine. Hmmm…

Explosion of delight.
Copyright 2020 Abe Pachikara (click for larger image)

A Time to Engage

Lastly, I sit in my immune-collapsed state and watch the world from a safe distance. In shock and awe. Our world is in shambles. Disease. Then, rampant unemployment. Then, a blithe disregard for prudent practices as bars, businesses open. Then, protests from a festering lack of civil rights. Now, massive, spontaneous crowds that seem more coherent than the federal gov't. Is that even possible? I want to do something physical and kinetic. Work in food pantry. Protest in the streets. Embed myself in the chaos and photograph the way police and looters are lashing out. In truth, I have conveniently overlooked ways to engage from a distance as it is less my preference - - like being part of the current political cycle. Yet I will rethink my approach and stubborn mindset.

Undulating, Part 2.
Copyright 2020 Abe Pachikara (click for larger image)

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Have a wonderful day.