Occasional Insights: Adventure #2, as of Mar 17

Hi Folks,

Here's an update from my musings and activity from the last 5 weeks on this adventure back into PTCL-NOS.

Quotes Floating in My Mind:

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

Napoleon

“What would be the point of living if we didn’t let life change us?”

Carson, Downton Abbey, Season 1

“To live content with small means; to seek elegance rather than luxury, and refinement rather than fashion; to be worthy, not respectable, and wealthy, not, rich; to listen to stars and birds, babes and sages, with open heart; to study hard; to think quietly, act frankly, talk gently, await occasions, hurry never; in a word, to let the spiritual, unbidden and unconscious, grow up through the common. This is my symphony.”

William Ellery Channing

I am done with dating sites. I am now focusing on pizza delivery guys, because at least I know they have a job, a car, and pizza.

Linda In Disguise

“Have patience with everything that remains unsolved in your heart. Try to love the questions themselves, like locked rooms and like books written in a foreign language. Do not now look for the answers. They cannot now be given to you because you could not live with them. It is a question of experiencing everything. At present you need to live the question. Perhaps you will gradually, without even noticing it, find yourself experiencing the answer, some distant day.”

Rainer Maria Rilke, Letters to a Young Poet

Human nature has a tendency to admire complexity but reward simplicity.

Complexity has an inverse effect on your business’ ability to scale.

All too often we are trying to impress ourselves.

Not sure of author

“This is the true joy in life, being used for a purpose recognized by yourself as a mighty one. Being a force of nature instead of a feverish, selfish little clod of ailments and grievances, complaining that the world will not devote itself to making you happy. I am of the opinion that my life belongs to the whole community and as long as I live, it is my privilege to do for it what I can. I want to be thoroughly used up when I die, for the harder I work, the more I live. I rejoice in life for its own sake. Life is no brief candle to me. It is a sort of splendid torch which I have got hold of for the moment and I want to make it burn as brightly as possible before handing it on to future generations.”

George Bernard Shaw

Dear God, I bet it is hard to love all of everybody in the whole world. There are only 4 people in our family and I can never do it… Nan

Dear God, I think about you sometimes even when I am not praying… Elliott

Comments from 2 children

Thanks You's

Top of the list is the whirling dervish who is my Mom: the house is ship shape, Indian cuisine rolls out daily, the roses are trimmed and she noodles on how to make a visit by anyone the best of visits. With the coronavirus threat, I think often of how to ensure she is not put at risk. Yikes.
Also thanks to my boys for helping with logistics around the house and things like runs to the grocery store given Mom and I are "immuno-compromised."
Of course, thanks go to my sisters Susan and Cindy, and brother-in-law Chris for their thoughts, ideas and help from far away. And close up - Susan and Chris made a huge commitment, coming out for the week that Mom and the boys went to M'boro for Mom's gallery opening.
Speaking of logistics, a big thank you to our neighbor Anne for taking the boys to school when I was out of pocket at UW Med Center.
Thanks to family and friends who made visits: Pat & Teresa, Machayan and Annu Auntie, my cousins Renju and Peter…
…And to those who intended to visit but prudently cancelled trips given the travel risk, Sobhana Auntie and Davis Uncle, and my buddies from high school, Sevmo, Kevin and Russ Ward.
A big thank you to Russ and to Amy Mills for shipping a big box of lip-smacking BBQ food from none other than 17th Street Bar and Grill in my hometown of Murphysboro IL. (Amy runs this fine establishment.) We treated the shipment like crown jewels when it arrived, and then devoured its glorious contents.
Thanks for the whimsical, meandering visit paid by Adi who leads the Windows Commercial Marketing Team I supported until recently, and Piper who "keeps the trains running" on that team and whose title could be Catalyst of Joy.
Thanks to Sebastian in Munich for the regular WhatsApp calls - it's great to have a friend whose a doctor to check in on me.
Similarly, the oncology team at SCCA who aggressively watches my numbers and charts out my journey with skill and deft - - Clinical Nurse Coordinator Beatrice Franco, Physician's Assistant Megan Shelby and Dr. Andrei Shustov.
Thank you to Davis Uncle and Sobhana Auntie for burning a candle 24 hours a day on my behalf.
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. I have family and friends who say a daily rosary me, some who dedicate a decade of their rosary, and some who include me in their daily prayers. All powerful tactics, in my book.

I have to wonder, if the cancer triggers all this goodness, is the cancer all bad? And, do we not live in a life of abundance?

Mom and I

Copyright 2020 Abe Pachikara

Status

I am much more aware how a malady can cause havoc throughout my body. And vice versa, how so many problems clear up when a disease recedes.

Tumors… "Round 3" of chemo has nearly obliterated the tumors. The report from the PET scan that we ran after Round 2 indicated very solid progress. In some places like around my lungs, the lymphoma is no longer detectable. God willing - - "inshallah" as my Muslim friends will say - - we will get to a full remission by the end of Round 4 - so we can proceed with the next stage of this small, grand war.
Energy & stamina… Both continue to rise. Mom and I now go out for a daily 2 mile walk, and the route is hilly. Even when my blood chemistry is anemic (most of the time), I don't show the symptoms like dizziness, etc. I cannot describe in words how good it is to be progressing towards to my former level of get-up-and-go.
Blood chemistry… Blood composition comes in and out with each round of chemo, akin to the tide. I am right now 10 days out from the 3rd round of chemo and everything is slumping. Even plummeting. As expected. Red blood cells are below range. So is my hemoglobin and hematocrit. Platelets are also down. Again, as expected. My immunity is also low despite taking a drug that boosts bone marrow activity. Chemo therapy is a carpet bombing of the whole body. My blood test yesterday (Mon) indicated my chemistry is much lower, and hence I had another transfusion last night.
Heart rate… No different from prior weeks - still hovering between a zippy 100 to 120 beats per minute. It was as low as 90 last week which was good to see.
Weight… I have seen a slow but steady rise from a low of 139 pounds, to now at 147.4 pounds. My goal is 165 and I need to get to this sooner rather than later. Why? To be ready for the transplant stage which will be hard on my body.

Musings

I think I'm becoming a skinny, but lumpy guy

Did you ever see the TV show, "The 6 Million Dollar Man"? It ran from 1974 to 1978 and man I loved that show. Now, with some whimsy, I view my own rebuilding as the chance to be the toned, muscular physique that has eluded me for, well, decades. "We can rebuild him. We have the technology" is one of my mantras.

One part is to focus on regaining my former weight, minus ~5 pounds. So, I do think there's some days I eat +3,000 calories. But I'm realizing this may be pretty stupid - - gaining it "fast" will probably mean gaining in the "wrong" places. Already, I see that it's my tummy that is growing faster than other body parts. Again??? Clearly, I need to change my gameplan. My muscle tissue is improving very, very slowly. But gosh it is great to eat 6 times a day, sometimes seven. :-)

On the Horizon: the Transplant Battle

In the realm of traditional medicine, the next phase would be a transplant of someone else's immune system into my bone marrow.

The medical professionals call it a "bone marrow transplant" when the stem cells are extracted directly from the donor's bone marrow, a "peripheral stem cell transplant when it is extracted out of the blood. But I think a better term is simply an "immune system install."

Donating your immune system maybe the closest for now to donating a critical software system in your body. You keep all of it, you share a bit of it, and it then runs on another "machine" - - someone else's body. In that respect, it's pretty wild.

"Why do you think I need this?" I asked Dr. Shustov.

His logic was simple and compelling. The current chemotherapy is the most potent suite of drugs available to me. Based on the PET scan report, it is doing the trick and destroying my cancer. But, but, but… there will STILL be some number of malignant lymphocytes that will survive, mutate and be floating around in my body. All may look fine, but akin to battle-hardened soldiers, these lymphocytes will grow in numbers and stage a comeback. And there's no chemo treatment that will stop these mutated cells. So a new approach is needed.

Our bodies are like an outpost in the wilderness, and cohorts of wildlings are attacking and attacking. Each time they get better at their tactics. And if our immune systems are working, they still outwit the adversaries. For now I am winning against my T-cell lymphoma wildlings. With the help of the current TEC chemo cocktail. But someday, they will come back in larger numbers and know how to withstand my best weapons. And there's nothing better than TEC right now. So, I need to be ready with a new set of tricks before they devour me alive.

Hence the "stem cell" transplant. Essentially, replace my immune system with someone else's to bring a new fight to the battle with these mutated cells. (This is called the Graft Versus Lymphoma Effect.)

I have five hurdles to overcome to get to the "other side." With the help of SCCA, I MUST:

Go into full remission from the current chemo treatment. The cancer must be "below detection." (There's a ~50% chance this will happen. If not, all bets are off.)
Receive approval from my health insurance provider to the $1 million cost for the procedure. (Or find an alternative, such as going to Canada as the UBC Medical Center is world class, or to India as this treatment at a place like Christian Medical College, Vellore costs a "mere" $30k to $50k.)
Find a donor whose DNA profile matches mine. Evidently, I have 18 possible matches worldwide.
Cope with the GvHD - - Graft versus Host Disease - - that will be triggered because the foreign immune system incorrectly thinks everything in my body is an invader. Immuno-suppression can be as little as a skin rash to a full-on attack of one's own heart. (There's a ~20% chance of not surviving this stage.)
Potentially contend with a recurrence of lymphoma that the new immune system cannot stop. (There's another ~20% chance of not surviving this stage.)

In the Present: I Need to Live Fully Now. "The Other Side" is Unclear

Clearly, a transplant procedure is far from perfect. What I like - - a lot - - about my oncologist Dr. Shustov is his candor. And context. As example, I had a long initial discussion with an oncologist from the SCCA transplant team, yet came away unclear about a few things. One was the sentence, "50% chance of disease control after 3 years." Huh?

Words are powerful. They frame how we view a situation. What does this phrase above in blue mean? Do I have a 50% chance to be "alive and kicking" after the treatment? Well, perhaps…

So I asked Dr. Shustov, "What does '50% chance of disease control' mean, in lay terms?"

Here's what he said. 3 years after the transplant, 50% of the patients are not dead, and are carrying on with their lives. (Yes the 50% made me say "Yikes.") Just the rephrasing from words like "disease control" or "alive," to "not dead" are very different interpretations of the same situation. The first 2 sound pretty good, even rosy. I will emerge victorious. The latter, "not dead," sounds like the battle continues.

Here's why:

The "50%" who are survivors will experience a quality of life that varies widely. Some people will have mild and manageable issues from GvHD. Some will be bedridden at best. And the rest will be somewhere along this spectrum. Per Shustov, getting to "50% disease control" simply means my quality of life will be somewhere from okay to terrible. If you ever read the excellent book, Being Mortal by Atul Gawande, you will learn that quality of life is often overlooked in the medical profession. Too many doctors focus on "the cure" regardless what this means in terms of your ability to have a normal lifestyle.

The upshot is threefold:

A transplant is a great option if all others are worse. So we charge forward, full on.
My level of GvHD may be lower, as I scored a zero on the Hematopoietic Cell Transplantation-Comorbidity Index (HCT-CI)
Most important - - holy moly, the next 6 to 8 weeks before the transplant may be my best remaining weeks... of my entire remaining life. I better enjoy each day and night to the fullest, no? But… should we not live like this always? To quote Master Oogway in Kung Fu Panda, "Yesterday is history, tomorrow is a mystery, but today is a gift. That is why it is called the 'present'."

Our Medical Costs are Nutty

How is it that a stem cell transplant costs $1 million in the US, and between $30k to $50k in India's best places. And these include world class institutions. That's a 20x to 30x difference. We have lost all control of our medical costs, no?

Be an "Immune System" Donor

It never dawned on me to be a donor of my immune system. Until now. In the state of Washington, one can indicate on their driver's license that they are an donor of such organs as heart, lungs, etc. That does not include your immune system from what I understand. But I could have done the same and declared myself an immune system donor, via a different process. Wow.

It's incredibly helpful to do so, if for no other reason due to what I'll call ethnic limitations. Evidently, donors need to be in the same ethnicity as the recipient. So some groups are in dire need, like Native Americans, African Americans, Puerto Ricans, etc. People simply don't know, and don't act. But in general, the # of donors is not huge.

It's not hard to be a donor. There's a phone call to see if you're eligible (e.g. a history of cancer will knock one out.) Then there's a blood test that can occur anywhere like Quest Diagnostics, which will be free. This creates your HLA profile to help match you to people who need a transplant.

It's easy to donate. Nowadays, most donors don't donate by a direct extraction from the bone marrow. That's actually a cleaner way with lower GvHD issues, as it means purely stem cells. But it's more painful and involved. The other way is "peripheral stem cell transplant" - - for a few days you get injections to draw out stem cells from the bone marrow into the blood stream. Then, akin to an IV, they draw your blood using a process similar to kidney dialysis, filter out the stem cells and return your blood to you. The small but precious bag of stem cells is then airlifted to the donor, anywhere in the world. Wow.

Evidently, I have 18 potential donors, worldwide. Dr. Shustov said that's a lot. Sounds like very few to me.

To learn more on how you can be a donor, you can visit Be the Match, the Fred Hutch website or World Marrow Donor Association.

I Have a Swimmer's Body

No, I don't mean it's sinewy and built for aquatic speed. I mean that at a steady pace, every shred of my body hair is vanishing. I recall, "in the old days" when I was in college my friends on the swim team would shave their entire bodies. From head to toe. (This is decades before the high tech body suits that are now used by our Olympian swimmers.) That's where I am rapidly going, due to the chemo. I do have one question - - Why do the grey hairs survive longer? That's what's left on my face. Just the grey hairs. I need to ask the medical team.

My Grey Hairs: Fighting back the lymphoma wildlings

Copyright 2020 Abe Pachikara

A Very Big Care Package

Here's a few shots of the massive box overnighted with yummy BBQ food from 17th Street Bar and Grill. Thank you Russ and Amy!

Sadly, there's no evidence remaining of any of this...

Copyright 2020 Abe Pachikara

Starting CBT - I am Super Excited

I have decided that all of this cancer is a bit much for me. Normally, I would carry on and disregard my mental workings. Not this time. I know psychological guidance will be good. So I asked for help from SCCA's counseling services. Last week I met with a chap who has a PhD in Psychology and also is trained as a psychiatrist. He indicated he's going to take me thru "Cognitive Behavior Therapy" sessions. Damn was I happy to hear this! I have wanted to better understand CBT for a while.

What do I know so far? Well it's tough to control our emotions. But we can influence our a) behavior and b) our thoughts. And these two elements then positively affect our emotions. A great tool for this is mindfulness meditation. I have read portions of two excellent books by Jon Kabat-Zinn: Wherever You Go, There You Are; and Full Catastrophe Living.

One of my favorite quotes out of the first book is, "the water boils but not the pot."

I'll let you know what I learn.

Good Habits to Help Blunt the Chance of a Malady

I have been reading a few books on alternatives to traditional medicine as a way to treat cancer. And to minimize it happening in the first place. I think good, balanced living can only help deliver better health. Better immunity. And fewer maladies. It's easy to do, and if anything, just as easy to stop doing. Life is full of stressful, and fun, distractions. Here's 11 ideas.

Avoid negative personalities - "friends" & personalities who see the world as 3% empty, not 97% full, well, it's doubtful they make you more resilient.
Exercise - 6 days a week, ideally for 40 mins or so. A great book on this is Younger Next Year.
Eat lots of organic veggies and fruits - Organic for 2 reasons: 1) You don't need the pesticides in your system; 2) Organic means the farmworkers won't be exposed to pesticides either.
Consume humor - Listen or watch comedy on a VERY regular basis. For example, enjoy a whimsical YouTube video before going to sleep. Like this one by Maximbady.
Crystalize your gratitude - For example, try my "Life is epic" exercise here
Nurture your own village - Steady interaction with family and close friends. It will take work at times - - you know, people can be such a pain in the butt, right? - - but we all need a village.
Practice mindfulness meditation - As one place to start, check out UCLA's free program
Pray - they say prayer has similar benefits to meditation. Why not do both?
Reflect via journaling - start the day by writing what's on your mind for 5 mins. Just 5 mins.
Settle "the record" in a good way - Be in a good place with your loved ones. Here's an example.
Get outside regularly - for the fresh air, the Vitamin D, and the happiness delivered via our sun.

Chemo poison in my nails. Also why we should only eat organic.
Copyright 2020 Abe Pachikara

The Cancer's Progress

If you want a picture that supports eating organic, look at this photo of my left thumb. That is the chemo, in my system. [show your thumbnail, show you and Mom] Note: in a similar yet invisible fashion, non-organic foods are embedded with pesticides, chemicals and growth hormones. You don't want those in you, no?

Mundane Things I Can Do Again

When the malady hit last October, I did not realize how my body was going into a deeper and deeper stage of siege. Normal actions stopped occurring. I watched myself and wondered, "now what the heck is going on? One more thing I can't do? You gotta be kidding me." The extreme fatigue, and swelling in my legs, left arm and tummy got in the way of so many normal routines.

But now, with the chemo treatments, some aspects of body function, flexibility & strength have returned. And this "shroud of inability" is lifting. It's an understatement to say "it's been great." I now better see and appreciate actions that evidently I took for granted. Here's 14 that come to mind.

Walking at a normal pace.
My legs lifting themselves when putting on pants.
Lifting my arms straight upward without feeling discomfort.
Eating more than a small bowl of food.
Eating any food, of any texture, without extreme discomfort in my mouth.
Fitting into my shoes again.
Fitting into my jeans again. Actually zipping the zipper.
Standing up from a chair without having to negotiate with myself.
Being able to stand for the entire length of a shower; no more need for a chair in the shower.
Pivoting my ankles to the left and right, up and down.
Wearing normal underwear as my thighs are no longer like tree trunks.
Sleeping in a bed instead of an easy chair.
Sleeping on my left or right side; there's no swollen tummy to cause pain.
Sleeping thru the night, rather than getting up to pee every 90 mins (due to the drainage of the lymphedemas).

Roller Coaster Ride Inside

I am convinced our bodies can take a MASSIVE beating. I also think our bodies can serve as inspiration for our mindsets and outlooks. Why? If we could only see how physiologically resilient our bodies are, perhaps it would help us be more psychologically resilient. Below is one example. In the course of 6 weeks, my platelet count went from the 300,000s to 4,000 and back. My platelets took a beating but came back. To quote Monty Python, "I'm not dead yet." Damn!

I know they say "the mind leads the body," but I think the observant mind would be inspired by the body and be that much more of an effective guide.

My platelet count and the beating it survives from chemo - inspiring my mindfulness

Champion Roses are Coming!

It imperative to celebrate the details. Back in 2018, during the Labor Day weekend, Mom paid a visit to me. We went to Portland, OR. The highlights were stopping by the Trappist Monastery, lunching on Vietnamese cuisine at Lac Luc, and visiting the fabulous experimental rose test gardens. There, we came across the breathtaking "Mother of Pearl" rose. Of perhaps 1,000 varieties, this stood out for me. Finally, last week I took action, placed a mail order from Witherspoon Rose Culture in Durham, NC. They arrive this Thursday.

Luxuriating at the International Rose Test Garden
Copyright 2018 Abe Pachikara

Bathroom Night Treks: Part 1

Late last night, on a visit to the loo, I realized something: my ankles don't have spikes of pain. It was so nice. You see when my legs were swollen, I elevated them under a few pillows and magically they were visibly skinnier by morning. (Why? Because the interstitial fluids had drained to my bladder. Elevating the legs and left arm was a fantastic idea by mom.) But this meant my legs went from elevated (a downward slope to my torso) to vertical when I stood up. For a geometry wonk, perhaps a 120° swing. In some manner, the fluid in my legs would head for my ankles and each step was a spike of pain. But each step was about 50% less painful than the prior until things sorted themselves out. But now, I have no swelling, so no late night pain. How nice.

Bathroom Night Treks: Part 2

400 - 500 times. That's how often I think I prayed to say thanks about my heating system between December to February.

How so? First between the lymphoma and the treatment, I always felt chilly. In the daytime, that translated into wearing two hoodie jackets, or a hoodie draped over with a blanket. Pretty odd sight, yes. But in the middle of the night… hopping out of bed without layers felt like walking to a bathroom out in the backyard. Yes it was in my brain, and that's what drugs do you to.

Second, just walking to the bathroom was exhausting. So I had a new habit: sitting on the toilet even to simply relieve my excess fluids. Right in front of me was the vent to the heater. More than 50% of the time, warm air (correction, fabulous, ambient, post-caveman warm air) was wafting up towards myself. The heating system was reliable like the sunrise. Man that warm air was an awesome sensation!

So I would just stare at the heater vent and say a little prayer, "Oh man, it's running again. Thank you for an insulated room, a roof that works, great landlords, and the maintenance work we did back in September. It would truly suck if this conked out."

Because I felt like it was 60° in this room (though it wasn't as I had set the temp as high as 72°), my mind may drift into recent news of local homeless camps in Seattle. Then I would ponder what it's like to sleep outside wrapped in a whole bunch of worn out clothing trying to stay warm. And then I would trot back to bed and fall asleep for another 75 to 90 minutes. Only to repeat this ritual.

I prayed about the heater more times than about my Mom and Dad. Outrageous? Yes. But just do the math. Five to six visits per night, for three solid months. That's 3 months x 4 weeks / month x 7 days / week x 5 bathroom visits / night = 420 prayer sessions. 😊

I Passed the Coronavirus Test

On Thursday evening, Mar 5, I had a 100.7° fever. Yikes. I needed to get it below 100.4 or be forced to visit the ER. So I slept for an hour. When I checked, my body temp was 103.3° F. So I went to UW Med Center. One of their first observations was "you need to be tested for coronavirus. We'll get the results in about 24 hours."

Yikes. I asked what happens if test positive. "We don't know. There's no protocol yet for cancer patients with COVID-19." So no idea how long I would be held. And no idea what happens to my chemo treatments.

But the test came back negative. Whew…

"Coronavirusing" Before it Was Fashionable

Life without human interaction is so different. We live for crowds, don't we? Mom and I have largely been hunkered down since December. It's been strange in some ways. Now it's stranger. We shop just when the Fred Meyer grocery store opens at 7 am. Best selection. Fewest people. And the whole world is trending to this. No visitors. No going out. No attending church, movies, diners, plays, soccer games, etc. Lots more time with our loved ones, "for better or worse" as the saying goes. More reading, Netflix and other such habits. Life sure is different, no? As for being smart on the coronavirus, here's resources to tap:

A great COVID19 public service announcement from Vietnam, and 1 of a 1,000 Tik Tok videos (you may dance to this at a club someday)
A 15 sec Tik Tok video with a very smart hamster

"Coronavirusing" Together

Until this coronavirus thing blows over I won't enjoy too many more visits from family or friends, from which I have gotten very spoiled. It will be back to video chats on Zoom and WhatsApp. Yes video calls are delectable but still not the same as in-person meet-ups. It's akin to the stark difference between non-fat and full-fat ice cream.

I can tell you as someone who has self-quarantined for a few months that the isolation can get a bit buggy in your head. I cannot imagine what it's like when the society of Earth. I do like how Donald Trump uses the prefix "super." In this context, it's going to be important that we are super-kind and super-connected to our physical and virtual village of neighbors, family and friends. Otherwise, we'll all feel disconnected pretty quickly. Not having sports to scream at, restaurants to lounge at, and in general mingle with other human beings - - for most people, it is going to feel like living in a dystopian sci-fi movie. So make time, say high (by phone or computer) and check in on each other. For all parties, the kindness will feel good and not be forgotten.

No More In-Person Visits - So Relish What Happened, No?
Here's a few shots from the memorable visits before the COVID-19 dragon flew into our lives...