Hi Folks,

 

Here's an update on my adventure back into PTCL-NOS. It's been a packed 4 weeks.

 

Quotes Floating in My Mind:

 

" 'Tis but a moment from the sublime to the ridiculous."

Napoleon

 

The butterfly counts not months but moments, and has time enough.

Tagore

 

When you face adversities, I firmly believe God helps you find the strength inside yourself that you need.

Mom, a veteran of helping as a cancer caretaker at this point

 

People are frugal in guarding their personal property;

But as soon as it comes to squandering time they are most wasteful of the one thing in which it is right to be stingy.

Seneca

 

Our true home is in the present moment.

The miracle is not to walk on water.

The miracle is to walk on the green earth in the present moment.

Peace is all around us - - in the world, and in nature - - and within us - - in our body and in our spirit.

Once we learn to touch this peace, we will be healed and transformed

We need only to bring our body and mind into the present moment, and we will touch what is refreshing, healing and wondrous.

Living Buddha, Living Christ, Thich Nhat Hanh

Smoldering Heart of a Flower.

Copyright 2020 Abe Pachikara (click for larger image)

Thank You's

  • To Mom, the consummate "nudge" - - thereby making each day that much better
  • My sisters Susan and Cindy for making things like my bday celebration delightful. They are naturals at this.
  • To the mystery shopper who sent a book mom is devouring, Living Buddha, Living Christ.
  • To my cousin Niseema and husband Sam for runs to Costco and Indian food stores, and bringing over Sam's Bengali food.
  • To Anne Wright for the fabulous crop of organic greens
  • To Shawn Fojtik, who posed the idea of a Go Fund Me page. And Brian Grady for helping polish it.
  • 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.
  • Thank you to the tireless and vigilant medical team at SCCA, and at UW Med Center (spanning ER, ICU, Oncology, Interventional Radiology and others). I have not interacted with a person who was not 100% "on it." Special thanks to Team Coordinator Joseph Delos Reyes, RN extraordinaire Beatrice Franco, RN Rachelle Kiesel, PA Hematology-Oncology Megan Shelby and Dr. Andrei Shustov.
  • To our next door neighbors Eric and Jennifer for helping us attain more normalcy - - be it to accept packages while I am in the hospital, or jumping in to help my son Sidd build a chin up bar in the garage. Eric ensured we had an industrial strength solution. More important, his tutelage to Sidd on power tools showed my son that "gadget loving" definitely extends way, way beyond laptop accessories. 😊

 

After a Morning Shower.

Copyright 2020 Abe Pachikara (click for larger image)

Status

The cancer has vividly advanced in June while I took biologicals, and then retreated in July due to the chemo. I will put the retreat in [italics and parens.]

  • Tumors: Growing at all locations per the CT scan taken while at UW Med Center. The malady has a 70% proliferative index - - essentially it is growing rapidly day to day. [All tumors are 60-70% smaller.]
  • ​Weight: up from 162.4 on June 20th, to 178.8 as of June 29th​. That is 16 lbs in 9 days. I believe it is mostly water due to a lymphedema in my left tummy, and left leg. [Weight is down to 154.4. That means when the cancer advanced, it emaciated away 8 pounds of hard earned muscle tissue. ] Crazy times.
  • Physique: lymphedema has again resulted in a cartoonish bulge in my left belly and swollen left leg. [Tummy is smaller but bulky; left leg has completely returned to where it was on June 29.]
  • Breathing: when lying down, it is hard to exhale again. ​At first pretty distressing and then you get used to it and sleep sitting in a chair. ​It appears that yet again due to "disease load" I am getting fluid in the pleural sac of my left lung. ​​[On July 1, we drain​ed a liter of fluid - - that's over 4 cups - - at UW M​ed Center.​ On July 5, we took out another 900 ml. Breathing is closer to normal.]
  • Walking: the tumors in the left side of my groin create discomfort when I walk. UW Med Center ruled out hernia via an ultrasound test. Prior to June 20, I could walk 2 miles in about 55 minutes. ​On June 29th, I walked .6 miles in 45 minutes. [The original perpetrator is gone, replaced by a new one. I cannot walk much more than 20 feet due to a pesky abscess, but that should change.]
  • Dormant genes: DNA analysis indicates I have a gene, TP53, that is not functioning as desired (possibly turned off by the malady). It's central to signaling that an old cell should die. Shustov said it's bad news to see this as you cannot stop the malady so easily.

 

Outmatched Biologicals, & Approaching a Danger Zone

As of the last post, we had switched to a drug called Duvelisib. I had high hopes. Think of an NFL team that releases a few free agents to get a new quarterback. And nothing changes. Same with the Duvy - ah well.

 

So in June, the cancer advances on all fronts. By leaps and bounds.

 

My intrepid oncologist, Dr. Andrei Shustov, indicated that if the cancer's presence grows another 20%, it can bring a set of serious complications to the organs and muscles surrounding the tumors. I had high hopes for the biological drugs we have been trying - I prefer them as they only attack problematic cells (as opposed to chemo which damages all fast splitting cells across our bodies. It is far more indiscriminate.)

 

But in my case the biological drugs have not met the challenge of my malady.

 

Think of a nimble martial arts fighter - - the biological drug - - going up against my malady - - a sumo sized opponent who is unfazed and appears impossible to wound. Like this scene in Game of Thrones of The Mountain vs Oberyn Martell. And the malady has prevailed, just like The Mountain.

 

So it is back to the chemo. As they say, if you have to go to a knife fight, bring a gun.

 

My Cancer Gatling Gun = 96 hour drip of chemo cocktails

We switch to a chemo treatment called EPOCH: 4 days, continuous drip of a diluted cocktail of 3 drugs + big doses of Prednisone (a steroid) followed by one more chemo drug at the end. The idea is simple. Cancerous cells are most vulnerable at the time they are splitting. If you run a 4 hour infusion, you will hit hardest those cells splitting in that 4 hour window. What if you a) stretched the infusion time from 4 hours to 4 days and b) dilute accordingly? The data shows for stubborn cancers, you do hit more malignant cells at the time they are splitting. The shortcoming: it is chemo; and it is an in-patient procedure. You need bed space in a hospital and insurance to cover the costs.

 

So that's what we just did.

 

Cage Match, Part 1.

In my last post, I said cancer treatment is akin to a cage match. I am locked in the cage with my malady. The medical team is akin to a pit crew. All we can do is keep changing weapons to see what, if anything, will keep the malady down. In July we chose EPOCH as my chemo weapon. And guess what?

 

Overall, good progress in a mere ~5 days.

 

The 96 hour slow drip of chemo cocktails has vividly beat back the cancer. Here's a quick rundown…

  • The tumor by the left ear: 70% smaller.
  • Tumor under my right jaw: 50% smaller.
  • "Death Star" in my left underarm: 70% smaller.
  • "Junior" in my right underarm: 60% smaller.
  • The collection of bumps around the back of my neck: gone.
  • The pain where my left leg meets the torso, due to tumors in my left groin: gone.
  • The bloated left side of my tummy: still firmly in place.

 

Yes I have questions… What will 3 or 4 rounds of this do to the rest of my body? How long will the cancer stay away when we complete EPOCH? Will we have the breathing room to start the transplant before the malady resurrects itself again?

 

The Three Mountains in Front of Me.

I slept poorly most nights at the hospital. The source? Worry.

 

One night, perhaps 4 am, I write in my journal to clarify my worry. What is it made of? What may help?

 

The outcome: I recalibrate what the journey looks like. This "bright, shiny object" called a stem cell transplant is more like a mountain, sitting behind a mountain, and followed by a mountain. 3 mountains.

  • Mountain 1: suppress the malady in a meaningful way. And do so while preserving the precious bone marrow. Is that possible?
  • Mountain 2: undertake the transplant, or transplants. I get the sense if we undertake a tandem approach, that actually means two transplants. Perhaps one mountain followed by another smaller mountain. (So four mountains in total?)
  • Mountain 3: address the resulting immune suppression problems. This is called Graft vs. Host Disease (GvHD), as the new immune system sees most everything as outsiders and attacks my organs. I believe GvHD can last a lifetime.

 

My worry right now is that mountain #1 - - suppressing the malady - - is more uphill than expected. Nothing cut and dry about it. And in better understanding the side effects that will arise, the current EPOCH treatment regime is no silver bullet.

 

Cage Match, Part 2.

What is chemo like? It's not a clean weapon that only injures your opponent. No, it's more like a concussion grenade. Now, think of being in a cage, with your opponent, and setting off the weapon. Yes it devastates my opponent, the cancer. But… both of us are pretty close to each other. So the concussion also pummels me with devastating force.

 

As proof, the last couple of blood draws indicated the following about my neutrophil level, "Too few cells to evaluate." about

 

Tandem Transplant?

Once we get past the first mountain, Dr. Shustov has suggested a "tandem" approach.

  • First, undertake an autologous transplant. We extract my own bone marrow, release a large chemo dose & radiation, and then reinsert my bone marrow back into myself. The high dose chemo and total body irradiation, will scramble your organs. Heart. Lungs. Kidneys. Liver. Etc. All are damaged and reeling. But if there's lymphoma that is in the body, this will help suppress it further. Also, my own immune system will not attack my organs. They get time to heal.
  • Second, undertake an allogeneic transplant. That is, insert someone else's immune system, but if possible, use a lower dose of chemo to start. The primary goal here is to weaken my own immune system so the new immune system is established while doing less damage to the rest of the body. Yes it will attack your organs but they will be sturdier. Less GvHD. (I may be incorrect about this and will clarify by the next update).

 

…So what to pray for now?

Given the low numbers for white blood cells in the past few weeks, I worry about my bone marrow. It has not responded as in the past to the injections to elevate it's activity. But the road ahead is long. I need my bone marrow the way a marathoner needs her knees. Odd as it sounds, pray for a quick healing of my bone marrow, after each wave of chemo.

 

Swirl.

Copyright 2020 Abe Pachikara (click for larger image)

 

Musings

Jabba Posture

Think of inserting two boxes of fluid into your abdomen. One on the lower left side. The other under your left lung. That's what things felt like in June.

 

More specifically, think of fluid building in two ways: into the tissue of my lower left abdomen as a lymphedema; and as fluid in my left lung's pleural sac, breathing was getting more strained. Lying down triggers a strained breathing where exhaling was hard due in part to failing lymph nodes in my chest. Sitting feels like two Lego blocks in my torso competing with other organs.

 

The one posture that sort of worked? To sit reclining back and to the side, like Jabba the Hutt. Too damn funny. Perhaps he had fluid in the lungs too, no? Do they have healthcare on his planet, Nal Hutta?

 

Testing My "Unshakeable" Faith?

I was materially worried by the end of June. Carrying on was hard. Sleeping. Breathing. Sitting. The drugs were failing. Every day, the cancer served me a proper whooping. If we cannot suppress the T-cell lymphoma, isn't a transplant a moot point? More chemo? Ugh. I worried (and still do) for my bone marrow from more chemo.

 

I am less worried now. First, I am not as sick. Funny how that settles the soul. And, we do still have options. Yes, more toxic options. But the adventure is by no means over.

 

But wait, what does all of this say about my resolve? Notably, I see I am not the complete believer in my success I thought I was. Like a video game, the battle at stage 4 cancer is grittier, more foggy, more physiologically damaging. And clearly, it's doing harm on the outside ramparts of my persona.

 

All the more reason to tap the basics in a disciplined, persevering manner. Sleep. Food. Prayer. Exercise. Laughter. And lean on the community I have to create that Teflon coating that all of us humans need.

 

Prayer Specialists

I had the good luck of two WhatsApp calls, with friends Anand, and later with Fritz who is in New Zealand. They cited verses from the bible and prayed over me with an intensity that only comes from making this an intense and mindful pursuit. It was good fortune to have these occurrences.

 

A Habit Crosses 5 Months

This marks what has become a 7 days a week occurrence: saying the Rosary with a couple of aunts, a few cousins, my buddy Pat, and my sisters and Mom. All via Zoom. It's bloomed into more than a set of prayers. Attendance varies based on their day job's workload. The flow has morphed a bit…. People may recap their day, then we have a two minute transition of quiet using our breathing to center the mind. Finally the prayers - about 18 - 20 minutes. We end with a few more stories of the day, and people drop off as needed.

 

It's happened every day. 7 days a week. For 5 months. Wow.

 

Why does it stick? I think COVID has helped. The rosary has been a natural connection point every day at a time the world is a bit disconnected. Regi Auntie began the remote prayers in February, prior to the world-scale malady. Very prescient, no?

CA Tulip Smiles at Me.

Copyright 2020 Abe Pachikara (click for larger image)

 

Go. Fund. Abe.

Go (mobilize your network to). Fund. Abe.

The transplant team informed me back in March that once the procedure is completed, it is generally 12 months before one can return to work reliably. Twelve months? That's in addition to time off so far? Sheesh… If ever there is a time I regret not having focused on just getting rich, it is now.

 

In April, my friend Shawn casually said, "Awbay, set up a GoFundMe page. It will help." I wrestled with this idea for weeks. I have never asked for financial help (other than mortgages from banks) and… now? I need to? Or perhaps, I should ask before I need to? Hmmmm…

 

But the idea of sounding like I am asking friends for money makes me cringe. Here's why… In my experience, and certainly during this adventure, I have needs that are both tangible and intangible in value. The intangible aspects are far more elusive, and deeply invigorate me. The intangibles are what I get from folks on the outbound email for this post. Your advice, comradery, jokes, stories, and actions, etc. are priceless for myself.

 

In that respect I have no desire for you to make a monetary donation. I say this at the risk of sounding ungrateful or like a curmudgeon; that's not the intent.

 

Here's what you can do… With the masterful help of my friend Brian Grady, I have posted a GoFundMe page. If you want to take an action that has more scale for driving funds, consider sharing the GFM page with those folks in your network of family, friends and colleagues who have a strong opinion about cancer. To the extent you are comfortable doing it, mobilizing others has huge value.

 

Partner in the Journey

Mom is such a natural born traveler for this odyssey. Be it at my house. Or at my hospital room. She's right there. She's bolstered by a network of in-laws she has always gotten along with, and siblings that are even closer to her, and children and grand-kids. But it still comes down to her. And she's relentless. Arthritis, medications, a slower cadence. None of these sideline her crusade to help. I saw it when Dad relapsed in 2016 and ultimately passed away on Jan 1, 2017. I don't know how people who are sick "go it alone" - - in those instances, the malady carries an enormous advantage. Not in my case. Mom's the secret weapon.

 

Why Zoom?

I scratch my head as to why it's so prevalent. What happened to Skype? It's transitioned into Teams, to some extent, perhaps. But it still was its own thing. And decent. And yet somehow, it's gotten blown out of the water. I only hear of people saying "let's meet by Zoom." Technology is so rapidly changing. Yikes.

 

Camping with Mom

It's around 4 am one night at UW Med Center. My worries have awoken me, yet again. To counterbalance, I try to observe the room, equipment, my own body, and then I hear a faint, somewhat lilting, quasi-regular snoring to the left. It is Mom. I smile.

 

Do you love road trips? How about camping? I love both, but never did either of these in a proper way with Mom or Dad. Every day and night since Dec 1, 2019, Mom has been at my side. Looking back, given the random nature of the fevers, I don't know where I am spending the night, "this night." But Mom's up for the adventure. And each night spent at the hospital, she will sleep nearby on a range of "sleeping" furniture, from janky cots with bad springs and thin mattresses, to sleek functional day beds.

 

I realize, hey I have had a LOT of campouts with Mom at this point. Someone assigns you a spot to set up. You eat your meals together. Read trivial and notable passages to each other. Hike the halls. Do a daily 5 pm Zoom rosary. Watch Jimmy Kimmel, other YouTube personalities or a movie. In that manner, it's been sublime.

 

Skyward.

Copyright 2020 Abe Pachikara (click for larger image)

 

The Tally

If months were akin to rounds in a boxing match the current match would look like this.

Round

Month

Winner

Comments

1

Oct 2019

The malady

It's been quietly working for months perhaps and makes a big splash.

2

Nov 2019

The malady

Kaiser is gearing up, denying referral for me to SCCA, and the malady marches on.

3

Dec 2019

The malady

The biological drug Folotyn did not slow it down at all. The malady infiltrates more of my body.

4

Jan 2020

The malady

We are regrouping away from Kaiser to SCCA, but the cancer is not waiting

5

Feb 2020

The forces of goodness and sunshine (FGS)

The TEC chemo regime was started.

6

Mar 2020

FGS

All aspects of the malady are almost gone, except the tumors in the armpits.

7

Apr 2020

Split decision

Yes, the malady is nowhere in sight. Ostensibly a crushing victory. But 3 weeks after the chemo ended, the tumors come blooming back. Perhaps it has mutated?

8

May 2020

The malady

We unleash Azacytidine + Romidepsin. Yes, the Aza stops the malady in its tracks, but the malady steamrolls over Romidepsin.

9

June 2020

The malady

We unleash Azacytidine + Duvelisib. Once again, the Aza stops the malady in its tracks, but the malady steamrolls over Duvy.

10

July 2020

FGS

We initiate cycle #1 of EPOCH a 96 hour slow drip of chemo (yes more chemo). The month is not over, and the side effects are sloshing thru me, but again everything is 70% smaller.

 

Limit of 1

When I look at how my family is contending with my malady, I wonder, what chaos ensues when there's another sickness that comes down upon a family? I think we would be a mess.

 

Birthdays are Pretty Impervious to Maladies
Some traditions just happen. Regardless the shennanigans of the malady, these persist. Birthdays are one of those traditions. Between Mom, my boys and my two sisters, I had a fabulous celebration. Mom created a feast, Paul and Sidd hunted down an exquisite cake, Susan corralled my many cousins for a Zoom chit-chat, and Cindy canvassed old friends and family for old stories and "Abe secrets." It was a hoot. The malady faded into the woodwork, as it should.

The Crack Cocaine of Blankets

Each time you are taken to a different part of UW Med Center requires you sit in a wheelchair, and get cocooned in at least 2 if not 3 pre-warmed blankets. Man oh man! Do you know how nice this is? I want a blanket warmer in my house (and of course the 20 blankets and a person to wash them regularly.) Ah well.

 

Backyard Citizen.

Copyright 2020 Abe Pachikara (click for larger image)

Flourishing in the "Coronaverse"

The pandemic is rising. The country is pushing back valiantly. How long it takes to curve things back down is unclear. In the midst, we find new ways to celebrate. One of my cousins had a bachelorette party - - originally to occur in Santa Fe, NE - - via Zoom. In advance of the Zoom event, her sister mailed out a "Santa Fe packet" to all participants with a tie-dye T-shirt, small vial of tequila and instructions on the drink to make. I hope we are all as undeterred and revel in our family celebrations and friendships, caring forth in a COVID-19 safe manner.

 

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3 Comments

  1. Bill T. July 21, 2020 at 9:52 am

    I’ve continued to think about and pray for you, marveling how you still have strength to battle on, and still able to see the beauty in the world even as it is treating your body so cruelly. Please keep fighting – secure in the knowledge there are so many with you.

    Reply
  2. Lisa R. July 22, 2020 at 1:19 pm

    Abe, I’m always deeply moved by your posts, your continued strength to battle on and the beauty of your observations. Thank you for sharing this with us. I will keep you and your precious family in my prayers.

    Reply
  3. Sarah Pease Darilmaz July 31, 2020 at 6:48 pm

    Abe, you’re amazing! I’ve always loved reading your thoughtful prose (full of adventures, revelations, and beautiful moments with your boys captured in exquisite detail). I wish the situation I came across your writing today was a holiday, celebration, or your annual Christmas card musings. Finding you in this intense boxing match saddens me greatly. I pray for a knockout and that you scale the mountains before you with the same inertia you’ve had in your life to this point. Always onward, upward, and with passion for success! Praying for you old friend. Xoxo

    Sarah

    Reply

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