Adventure #2, as of May 12

Hi Folks,

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

Quotes Floating in My Mind:

God put rainbows in the clouds for a reason.

Maya Angelou

If you love life, don’t waste time, for time is what life is made up of.

~~~

Do not pray for an easy life, pray for the strength to endure a difficult one.

~~~

It’s not the daily increase but daily decrease. Hack away at the unessential.

~~~

It’s not what you give, it’s the way you give it.

~~~

A wise man can learn more from a foolish question than a fool can learn from a wise answer.”

~~~

Be like water making its way through cracks. Do not be assertive, but adjust to the object, and you shall find a way round or through it. If nothing within you stays rigid, outward things will disclose themselves. Empty your mind, be formless. Shapeless, like water. If you put water into a cup, it becomes the cup. You put water into a bottle and it becomes the bottle. You put it in a teapot it becomes the teapot. Now, water can flow or it can crash. Be water, my friend.

Six quotes from the incomparable Bruce Lee

Dear God, grant me

Serenity to accept things I cannot change,

Courage to change the Things I can, and

Wisdom to know the difference.

Prayer of Serenity

It's times like these you learn to live again

It's times like these you give and give again

It's times like these you learn to love again

It's times like these time and time again

Foo Fighters, Times Like These

A Bouquet Above
Copyright 2020 Abe Pachikara (click for larger image)

Thanks You's

• To Mom for all things ranging from helping with the roses, the meals, and keeping things ship shape.
• Big, big thanks to my sisters Susan and Cindy, and brother-in-law Chris.
• 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.
• Thanks to Davis Uncle for helping me understand my current treatment.
• Thanks to my cousin Niseema for the runs to CostCo and local Indian food stores.
• Thank you to the tireless and vigilant medical team at SCCA, including counseling, nutrition, social work, physical therapy and financial services; and particularly Team Coordinator Joseph Delos Reyes, RN extraordinaire Beatrice Franco, PA Hematology-Oncology Megan Shelby and Dr. Andrei Shustov. It's akin to a carrier strike group, mobilized against my cancer. I am humbled.
• 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.

Status

It's been about 5 weeks since the 4th of 4 heavy cycles of chemo. We have changed strategies because…

• Tumors… They are coming roaring back. My underarms tingle, sometimes in an uncomfortable manner, from all the hypermetabolic work underway. Again. Sigh…
• Energy & stamina… So far, things are okay here.
• Blood chemistry… All elements are in the healthy range, albeit at the low end. One exception is my all important lymphocytes - - they continue to be just below the recommended minimums.
• Blood pressure… Rising a bit.
• Heart rate… Rising a bit.
• Body geometry… "Geometry" - - yes it's an odd term to use. But my tummy seems to be growing, as is the left side of my chest (my left "moob"?). But my muscles are still pretty minimal. Something is afoot.
• Weight… After a high of 162.8, I am drifting down. Now at 160.8. This may be the weight scale itself as it's no more than a consumer grade product. Or the lymphoma again consuming tissue. Time will tell.
• Financials… As of Jan 1, the treatment cost is: $362,349.33. The discount the insurance company received: $162,114.63. The amount my insurance company paid: $193,620.29. My personal bill is now maxed at $6,900.00. More frightening: if I add the Kaiser costs from Nov / Dec 2109, the tally is $483,470.72.

Out of Control Good Looks...

Copyright 2020 Abe Pachikara (click for larger image)

Musings

Shape Shifter
I wanted to share an update. Less using facts and figures. More as a story. Please forgive the length. Here goes…

Consider a fast moving illness. It doubles every week in my body. Like a car, moving at 130 mph in the inky night, headlights turned off. Loaded with scary people inside. But the sickness also responds just as fast to treatment, if and only if I find the RIGHT treatment.

That's my T-cell lymphoma.

By the time I get to the right treatment, the lymphoma has a near stranglehold on my body. It's a 30 foot long anaconda that's engulfed its prey. I am the prey. I struggle to exhale when I lie down, as odd as that sounds. (For myself, it was far more frightening than odd.) I can barely walk 15 feet at a time. I need to sit in the shower and on the toilet from the sheer exhaustion of "getting there." I've lost 30 pounds in 6 weeks, lost my appetite and struggle to stay hydrated.

That was my situation by the end of January, 2020.

Then I start my treatment. The right treatment. Voila! It's clearly getting the right response. Picture Genghis Khan and 400,000 warriors flooding the battlefield. Or Alexander the Great and his carefully orchestrated Macedonian armies. Boom! Literally the day after the first round of chemo, my tumors are 40% smaller! Yes, that's right, in 24 hours, millions of tumor cells lie dead across the fields and valleys of my body. It visibly shrinks bulky tumors. When I go home, I can exhale. For goodness sakes, I can walk to the mailbox 3 houses away. I notice the desire to eat, and guzzle a very, very large glass of water.

Things are looking up.

And they should - - I have taken a chemo cocktail that's been carefully researched and tested at Fred Hutch Cancer Institute. A heavy dose of 3 different drugs. Truly, SCCA delivered a bludgeoning. A walloping. A heartless pounding to the malady.

Think of a person scared of spiders, who comes across one. And beats it into the oblivion for no good reason other than fear, or anger, or vengeance, and the need for peace of mind that the problem has "gone away." That was the whipping my chemo treatment delivered to my lymphoma.

I feel good. Cautiously good, of course. We never get our expectations up in this game.

4 cycles later, there's little to show for the T-cell lymphoma. But, there is… a little. Could that be possible? Alas, the answer is yes. The PET scan indicates there is no trace in many parts of your body, and in all but two remaining areas, it is minimal. That's what we wanted to see. It's well below the all-important "SUV" score of 2.5. But, there are those two locations, the lymph nodes in my underarms, where the score is 3.1 and 3.8. Sigh…

Dr. Shustov, my intrepid oncologist, suggests right then and there that we should shift to biological drugs. An "epigenetic approach" - - where you don't change the underlying genes in your DNA, but rather you help your genes (currently fooled by your cancer) to again take the action they were designed to take. Such treatment is more targeted as it does not harm healthy cells the way that chemo treatment does.

Why? He says, "If this lymphoma can survive 6 cycles of CHOP treatment, and 4 cycles of TEC treatment, more chemo won't be useful to our goals. It will only be toxic to the rest of your body. We need to change our approach." He explains that somehow, the lymphoma has gained the ability to not permit enough of the chemo to reach the nucleus of the malignant cells. It does not poison the desired destination, just the rest of my body. And the effects of all chemo treatments are cumulative on the body. Sheesh…

More incredible, just 3 weeks after the final treatment, a new tumor begins to bloom, under the right jaw. What starts as a puny but belligerent bump grows in 7 days into a noticeable 1/2" sphere. And one of the former tumors by the ear that disappeared after cycle 3 begins to re-emerge. And the tumors in both underarms - - my version of "spidey sense" - - are tingling, again. Uh oh.

If this was a sci-fi movie, we would say we have a shape-shifter on our hands.

In 2016, my lymphoma needed 6 rounds of CHOP to go into remission, and 3 years to bounce back. But now after 4 rounds of TEC, it has bounced back in 3 weeks. From 3 years, to 3 weeks. My gut reaction? It is learning, mutating and morphing, like a cancer. Shit, IT IS a cancer. Oh my. The bullet train in me is picking up steam. I know this movie and I am ready.

How do I feel? Part of me sits in a cold, low level dread. Another part is in awe of my malady's athletic ability. I've got an Olympian on my hands, or should I say in my body? I am also dismayed. Preparations for the "next stage" - - the stem cell transplant - - is making tremendous progress. From a pool of 18 possible stem cell transplant donors - - worldwide, mind you - - we have identified a donor who is a) vetted for COVID-19, b) is still medically eligible, and c) is a 10 out of 10 HLA match. Why the dismay? Because we need to put this current pesky issue to rest, before I am eligible for the transplant.

I meet again with my oncologist. He is now even more defiant about the need to shift to biologicals. Goodness, gracious me - - I am so lucky to have this guy on my side. (I met Dr. Shustov pretty randomly, in a manner that can only be an act of Divine providence. Proof of God can be found in so many places, no? ) We'll undertake a different cocktail that has a dataset of good results. Shustov is a data driven guy and I love this. The combo?

• An HDAC inhibitor (drug: Romidepsin) helps stop tumor growth by inducing cells to stop dividing rampantly, appropriate cell death and cell differentiation.
• A DNA methyltransferase inhibitor (drug: Azacitidine or 5-azaC ) which is a DNA-modifying enzyme that helps genes regain their ability to suppress tumors. 

Results to date indicate a 50% response rate from Romidepsin + Azacitidine. I'll take those odds.

One good sign - my health insurance approved the drugs. Both have been around long enough to be available as a generic, which is good. But combining them is a rarity, so there was a chance of pushback. But that did not happen.

What if this fails? We have backups.

The first backup? We will go for something that is newer, perhaps more interesting but has lower response rates so far - - around 20% or 30%. It's called Checkpoint Inhibitors such as Pembrolizumab (Keytruda). You see cancer seems to fool our immune system just like this crook fools Inspector Clouseau. This group of drugs helps the immune system turn back on, take action and attack the cancer. It falls in an area called immunotherapy.

The second backup? DNA analysis is underway of my tumor tissue to inspect 800 essential genes. If any of 5 specific genes is not functioning as it should, we have a druggable option that has an ~80% response rate. If I recall my stats courses right, the overall probability is low - - 5/800 = 0.6% chance the druggable genes can help. Now apply 80% for the outcome from applying the right drugs. Total expected response rate - - 0.5%. I will take one step at a time.

The "next round" began last week. Let's see what transpires, no?

Another Beauty

Copyright 2020 Abe Pachikara (click for larger image)

Other Worldly Bachelor's Button
Copyright 2020 Abe Pachikara (click for larger image)

Health Insurance For All

Question for you - - how would you feel if a $500k bill landed in your lap. Sounds nutty, no? I know you're not an impulsive type. $500k = a new house. But you already have a place, a mortgage, car payments, etc. Why did you do this, again?

But this bill's not for a house, it's for medical costs. Damn! One of the few unplanned items in our lives is sickness. Take my situation. I had no plans for cancer. 6 months of bills adds up to $483k. And fortunately I had insurance. Thanks to Obamacare, in Washington State, my insurance cost about $20k annually between premiums and deductibles. That's a lot, but less than $483k, no? But how about the 27 million Americans who just lost their job-based health coverage (per Kaiser Family Foundation)? They're in frightening territory, no?

Hence, I am increasingly a fan of some manner of national health insurance. It would lift be a BIG worry for all Americans. About what? An unplanned and explosively massive medical bill. It also has upside - - for anyone who has a new business in mind, they are not chained to their current employer.

Two Precocious Twins
Copyright 2020 Abe Pachikara (click for larger image)

Life Carries On

I think it is helpful to have reminders, proof-points, and indicators that life carries on. In a good way. All around us. In addition to, or oblivious of, our maladies, struggles, etc.

My intent is not to suggest Life is callous. Rather, Life is a wide, wide river that does not stop. At any moment when there's hardship, there's also grandeur, whimsy and progress.

Pop Quiz: What are 3 examples that come to mind of life carrying on, in your life now?

For myself, "Life Carries On" includes the following 7 examples.

• My older one turned 18. Shoot! No way! When did he get past being this toddler with a tummy that was not just roundish, but so perfectly rotund it makes you think of touristy sculptures of Buddha? Now, he's lanky, sinewy, low key and quietly mapping out a very different college future from that he had in mind just months ago. One of the unchanging aspects of Paul is a hearty, loud laugh. Some goodness stays the same, eh?

 

 

Sidd's Fab Cake; Mom's Feast; Lighting the Cake; Celebrating Via Zoom; One of Susan's Many Creations

Copyright 2020 Abe Pachikara (click for larger image)

• Another age related example of "Life Carries On" - - my younger sister turns 50. 50?? To paraphrase a friend, "When did this happen? At times, she's still 9 in my world, and I her teenage brother." I literally had to recount my sister's life by decade. So much has happened. Geez, there's a lot of goodness contained in such a long duration no? Do I only focus on my cancer, or do I smile in disbelief?
• Unrelated to age, there's just the idea of physical growth itself. One of my lads is 5' 9 1/2", the other just a pinch less than that. Again, I ask, "seriously?" I think there was a worry among my boys - - "will I only be as tall as the shortest relative I know of, across both sides of my family?" That is no longer the detail that they need to fret over. And compared to the two toddlers that awkwardly rough housed 15 years ago, today's horseplay by Paul & Sidd is scary to watch, given their speed, size and strength. Again, I get to choose what I observe - - Do I watch this glorious rise, or let the cancer distract me to lesser attractions like tumors?

Three Amigos (or... Mom and the Two Behemoths)

Copyright 2020 Abe Pachikara (click for larger image)

• In the land of cooking, I have always tried out new stuff. Having Mom here with myself means a steady conversion of nuanced Indian dishes, from cryptic proportions and actions, into a codified recipe. There's deep selfish value in having each relative come and stay for an extended period of time, if you ask me. The resulting recipes become an esteemed, permanent part of one's "intellectual property of living."
• One more piece of cooking goodness - - 3 times in the past few weeks, I have had good luck cooking new recipes. A lamb dish. A pork dish. And a pizza crust so oddly simple to make and yet, my boys said it was the best crust they had had, anywhere. All this occurred under my roof? No way. ( I will paste the lamb and pork dish recipes below.)
• Mindful walking. Yes, "mindful anything" always struck me as a high falutin' term. What is that? But I have a better understanding of it now. When Mom and I saunter around the neighborhood, we stop to scrutinize and marvel at what's new in terms of buds and blooms. We're akin to flower cops, walking our beat. She brings her deep and wide botanical knowledge, and I bring nothing more than my camera to document a new flower from different angles. By the end of each day's walk, we feel at ease, as we know of some of the goodness being compelled out of the ground by the sunshine, water and nutrients.

Just Us Dandelions Here

Copyright 2020 Abe Pachikara (click for larger image)

• One last example… Daily rosary prayers as a social habit. For me, prayers = more religion; pretty quickly, too much religion. In truth I have learned my "religion tank" is smaller than I had envisioned. Okay, so be it. But I had not expected that meeting - - via Zoom - - to say a Rosary would be the vehicle for a daily chit chat with some good folks. I have been self-quarantined since December 2019 and this habit is very, very similar to friends meeting after work for happy hour, or neighbors meeting at the backyard fence with genuine curiosity and companionship for a "hello, how are things?"

So yes, "Life carries on" in so many ways. And all these help put my malady in perspective.

5 Random Bits and Pieces

• Good News Video. If you need a smile, the latest "Some Good News" video will help.
• Good Music. Thanks to former colleague Dan Piling, I discovered Times Like These by the Foo Fighters. Here's a new version on BBC. And an old one that gets my blood pumping. (Thank you Dan from the bottom of my heart.)
• What will "college" be in the fall? My older son wonders, what just vanished? Typical Freshman traditions seem shattered by COVID - - laboratory format classes, football / basketball games, after-parties and after-after eating, everyone seemingly smarter than you, meeting up with a new set of thought provoking people, etc., etc. Who knows if colleges will really open up, and for how long if they do before shutting down due to the second wave? No longer does Paul assume he's physically moving into dorms for Freshman year of college.
• Time flies. In getting ready for my younger sister's 50th bday, a question arises again and again: do I really know someone from 50 years ago? Do you ever ask, "Wait, do I actually have a memory that is more than [ 20… or 30… or 40 ] years old? How  much time has passed in my life?"
• Time vigilance. As my health improved, so my use of time deteriorated. One example - I was going to take photos of myself in my journey back to my target weight. But instead, I have no progression of shots. Such a photo series would have also captured the unexpected, like my left "moob" is larger than my right due to the returning lymphoma, and my face has gone from too skinny, to slender, to repopulated with tumors. I did not use time to capture this morphing back to the odd side of the world. But I can restart my time vigilance today.

Funky Side-Effect: Dysgeusia

This HAS to be a classic spelling bee word, no? D-Y-S-G-E-U-S-I-A.

A new and trippy phenomenon I am experiencing. My sense of taste is distorted. For starters, my tongue has a green tinge when I wake up. Water has a metallic taste. And it goes downhill from there. It lasts anywhere from a day to a week, depending on the individual.

18, at Last... Thank God Almighty, 18 at Last!

Copyright 2020 Abe Pachikara (click for larger image)

Two Recipes I Promised Above

Lamb & Crispy Chickpeas, w/ Yogurt

Serves 4

From the cookbook by Alison Roman called Dining In.

Garlicky Yogurt

• 1 cup full-fat or 2% Greek yogurt
• 1 garlic clove, finely grated
• 1 tablespoon fresh lemon juice
• Kosher salt and freshly ground black pepper

Chickpeas ad Lamb

• 6 tablespoons olive oil
• 12 ounces ground lamb
• 3 garlic cloves, finely chopped
• 1 teaspoon cumin seed
• Kosher salt and freshly ground black pepper
• 1 (15-ounce) can chickpeas, drained and rinsed
• 1 teaspoon crushed red pepper flakes

• 1 large or 2 small bunches of kale, or Swiss chard, or mustard greens

• Fresh tomatoes, quartered, or Olive Oil–Roasted Tomatoes (page 38), for serving

DO AHEAD: Garlicy yogurt can be made 5 days ahead and refrigerated; just know the garlic flavor will intensify.

MAKE THE YOGURT SAUCE: 

• Combine the yogurt, garlic, and lemon juice in a small bowl.
• Season with salt and black pepper and set aside.

MAKE THE CHICKPEAS AND LAMB: 

Lamb:

• Lamb: Heat 2 tablespoons of the olive oil in a large skillet over medium-high heat. Add the lamb, garlic, and cumin, and season with salt and black pepper.
• Using a wooden spoon or spatula, break up the lamb as it cooks until it’s browned and crispy, 8 to 10 minutes (the lamb will not be rare here; that’s more than okay because it will be crispy, and in times like these, crispy is better than rare). Using a slotted spoon, transfer the lamb to a bowl, leaving the drippings behind.

Chickpeas:

NOTE: I’ve tried to cheat the amount of olive oil here, always astonished that I’d need that much to get the chick­peas to be truly delicious, but it’s true. With too little oil, they’ll burn before they crisp and become soggy rather than crunchy.

• Combine the remaining 4 tablespoons olive oil, the chickpeas, and red pepper flakes in the skillet with the lamby drippings and season with salt and black pepper. Cook, shaking the skillet occasionally, until the chickpeas are very well browned and starting to crisp up, 8 to 10 minutes.
• Return the lamb to the skillet and toss with the other ingredients, letting everything mingle together. Remove from heat and transfer to a large serving bowl, leaving anything in the skillet behind (you’re not done with that skillet).

Greens:

• Separate the leaves and stems from your greens, then thinly slice the stems and tear the leaves into 2-inch-ish pieces and set aside.
• Add the chopped stems to the skillet and season with salt and black pepper. Cook a minute or two, just to soften slightly; they should stay pretty crunchy and fresh. Add the leaves and toss to coat until just wilted, 30 seconds or so. Season with salt and black pepper, if needed.

Combine:

• We add the greens to the serving bowl of chickpeas and lamb

Assemble:

• Option 1: We will prep Indian chapatis, or you can use similar alternates like tortillas. Smear yogurt sauce on a chapati, and add the mix of lamb, chickpeas and greens. Eat.
• Option 2: Per the original recipe, smear yogurt sauce onto the bottoms of four bowls and top with the chickpea and lamb mixture, sautéed greens, and tomatoes.

Pork Noodle Soup w/ Ginger & Garlic

NY Times

Serves 4 - 6 in 35 minutes

INGREDIENTS

• 3 tablespoons neutral oil, grapeseed, vegetable or canola
• 8 garlic cloves, thinly sliced
• 1 pound ground pork
• 1 ½ teaspoons red-pepper flakes, plus more to taste
•  Kosher salt and black pepper
• 4 cups chicken broth
• 3 tablespoons soy sauce or tamari, plus more to taste
• 1 large bunch pea leaves or spinach, thick stems removed, leaves coarsely chopped
• 1 tablespoon finely grated fresh ginger (from about a 1 1/2-inch piece)
• 6 ounces rice noodles (thick- or thin-cut), cooked and drained
• ½ medium red, yellow or white onion or 3 scallions, thinly sliced
• 1 cup cilantro, leaves and tender stems, coarsely chopped

PREPARATION

1. Heat vegetable oil in a large, heavy-bottomed pot over medium.
2. Add garlic and cook, stirring occasionally, until the slices become nicely toasted and golden brown, 2 or 3 minutes. Using a slotted spoon, remove garlic and set aside.
3. Add pork and red-pepper flakes to the pot, and season with salt and pepper. Cook, using a wooden spoon or spatula to break up large pieces, until the pork is well browned and in small bite-size pieces, 5 to 8 minutes.

4. Add chicken broth, soy sauce and 4 cups water. Bring to a simmer and cook for about 5 to 8 minutes or so, until the pork is very tender and the broth tastes impossibly good. (Give it a taste and season with salt, pepper, red-pepper flakes and soy sauce, if you want.)

5. Add pea leaves, half of the onion slices, and all of the ginger. Stir to wilt the leaves.
6. To serve, ladle soup over noodles and top with remaining onion, cilantro and toasted garlic..