Adventure #2, as of Mar 30

Hi Folks,

My chemotherapy is done. I am so elated. Day 3 of 3, of cycle 4 of 4, as of Saturday, Mar 28. So, I thought it good to send an update on this adventure back into PTCL-NOS.

But given the stress of these times, if you would like, "virtually" join me to dial down our daily stress. Sit comfortably. Close your eyes. Breath in, hold for 5 or 10 seconds. Breath out, hold for 5 or 10 seconds. Repeat 5 times. Okay let's go... 

Quotes Floating in My Mind:

Difficult days need not be dark.

JFK in the 1963 state of the union address: 

It is not that we have a short time to live, but that we waste a lot of it. Life is long enough, and a sufficiently generous amount has been given to us for the highest achievements if it were all well invested. But when it is wasted in heedless luxury and spent on no good activity, we are forced at last by death’s final constraint to realize that it has passed away before we knew it was passing. So it is: we are not given a short life but we make it short, and we are not ill-supplied but wasteful of it…

Life is long if you know how to use it.

Seneca

Friendship is unnecessary, like philosophy, like art, like the universe itself… it has no survival value; rather it is one of those things which give value to survival.”

C.S. Lewis on true friendship, from one of his classic, brief books, The Four Loves.

A village is so central to us humans. And yes, I have often pondered, what happens when we are alone, or without a web of people to help and cheer us on? COVID-19 is forcing the same observation on millions. Man oh man, I doubt I would survive without my family & friends. I am an extreme case, what with about 50 cousins, uncles and aunts (and friends on top of this). I live a rich, perhaps peculiar life I like to call the "intangible jet set." 

Abe…

Set aside 15 minutes in the morning and 15 minutes in the evening to do nothing but worry about the future. Sit at a table, make a list of all your problems and then think about them. But as soon as the time is up you must stop worrying, and whenever those worries come back into your head remind yourself that you can’t contemplate them again until your next worry time. You have given yourself permission to postpone your worrying until the time of your choice. Remarkably, it can work. It puts you in control.

Ad Kerkhof, Dutch clinical psychologist

Thanks You's

• A big thanks to Mom for more things that I can include here. One example is the extra caution during COVID-19.
• Thanks go to my sisters Susan and Cindy, and brother-in-law Chris, again for the COVID-19 vigilance.
• To family and friends dialing in daily, via WhatsApp and text messages to check in.
• 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

I have completed 4 rounds of chemo - with no side effects, which I find surprising. I am so very happy. Each round was an intense, 3-day, 3-cocktail dosage. While it did real damage to the tumors, it also has been very hard on my bone marrow. There's only so much of this pounding it can take.

• Tumors… "Round 4" of chemo is doing the desired damage. The tumors have pretty much vanished. Now it's a waiting game until we get the PET scan where we can definitively assess progress. I need full remission to proceed to a stem cell transplant.
• Energy & stamina… Mom and I now walk about 90 mins a day. And I am using 5 pound weights in my exercises. So good progress compared to January.
• Blood chemistry… If you look at my #s, you'll see I am anemic, and most aspects of my blood chemistry are low. That's to be expected but it's slowly coming back. We've limited the # of transfusions, which is good.
• Blood pressure… It's also in a better place. On Sunday, Mar 29, it was 112/68, way down from where it's been for the last 3 months, at around 130/85.
• Heart rate… I was thrilled to see today it was 84, down from a zippy 100 to 120 beats per minute for most of the past 3 months.
• Weight… The rise is steady but the "distribution" (on my body) is not. I am now up from a low of 139 pounds, to 154.2 pounds. My goal is 165. But I see it first accumulating on my tummy (why always the tummy, no?) and my face.
• Financials… I just realized I have not included this. It's pretty stunning and an example of why everyone needs health insurance. Billed since Jan 1, 2020: a whopping $242,066.03. The discount the insurance company received: $117,887.58. The # amount my insurance company has paid to date: $111,263.59. My personal out of pocket is now maxed at $6,900.00 (aside from monthly premium payments).

Musings

The less obvious implications of COVID-19 for healthcare

The COVID-19 dragon is putting all non-COVID medical procedures under pressure. Including cancer treatment - it's relevant to any non-trivial medical procedure.

COVID-19's Messy Underbelly: COVID-19 engulfed China's healthcare systems in a way that is less known. People with critical "non-COVID-19" medical situations were often told their time-sensitive treatment was delayed or cancelled due to the lack of availability of beds, staff and supplies. All medical resources were diverted to COVID-19. We know how many people died from COVID-19. What's undocumented is the # of people who died as a result. So, we don't know how many people COVID-19 killed. 

The Underbelly's Implications To My Treatment Plan: Now we see COVID-19 complications arising in the US of A. How funny - we have viewed the US as a nation with bottomless resources. That was a mirage. The reality - we have had it good for decades and sat on our heels. We had a pandemic playbook and supporting team, both of this were tossed aside. And then our President and his surrogates meandered from it is a "Democratic hoax," to "It's a pandemic" and then to "We can go back to normal life by Easter" - - well that creates a real kettle of fish, no? 

In a discussion with my oncologist, Dr. Shustov, he indicated that many stem cell transplants are being delayed if: their chance of success is low - - a Hail Mary if you will; they err toward the other end of the spectrum.

Why the delays? Because COVID-19 creates three categories of risk:

1. Infection related risk - - that is, while undertaking the stem cell transplant and being severely immuno-compromised, one could acquire COVID-19.
2. Logistical risk - - that is, from travel issues created by COVID-19: at the time we are to execute the procedure, what if the donor tests positive for COVID-19? Separately, will the airlines permit the courier who normally accompanies the donation? If not what happens as the protocols are pretty hard and fast. "Thinking out of the box" in these situations can create added chaos.
3. Infrastructure related risk- - that is, from shortfalls in the medical infrastructure in case of complications during the treatment: UW bed capacity; shortage of nurses, physicians and other staff; intubation capacity; shortage of blood supply as transplants can be blood intensive.

I have competing problems. First, if we wait, there's risk of the cancer rebuilding itself as not ALL malignant lymphocytes were eradicated. Second, we proceed now, I may encounter the infection / logistical / infrastructure risks mentioned above.

So what to do? Focus on what we control. It's the Prayer of Serenity, in action. Get a PET scan in a few weeks as that is needed in any event to prove we are in remission. Get a DNA profile of my tumors (we did a biopsy so we have the tissue) to see if there's a "biological" drug that can help keep the cancer at bay, potentially. Finally, see how COVID-19 progresses in the US over the next couple of months and decide how that changes timing for my transplant.

With Dr. Shustov before starting "round 4" of chemo...
Copyright 2020 Abe Pachikara

Finally, I am getting meat on my butt

For the past 3 months, I have not sat on a wooden chair - it's a collision of my butt bones and the chair. But, as my weight goes up from 139 to the 150's, my "own cushion" is coming back. Now, I can sit on a wooden chair for more than 3 mins. How nice!

COVID-19 primer and other useful resources

Mostly for my own education, I jotted down a list of items regarding the virus. You can find it here. NY Times has a vivid, visual article, How Corona Virus Hijacks Your Cells. And here's a video that does a nice job giving a historical view of the past few months.

Humor and prayer are vital nowadays, no?

I have been thinking a lot about how humor helps in these times that put uncertainty and worry into our minds. "Good foolishness" fills our lungs with laughter and releases the pressure we feel in our chest and hearts. Jimmy Kimmel has shared some excellent whimsy. Like this 41 second silliness. Or what happens when an Italian priest tries to use SnapChat for a mass. And Trevor Noah's Daily Social Distancing Show.

The sidekick to humor? Prayer. To the extent we can pray more, I think it helps. And in truth, I know I don't pray much at all as a fraction of any 24 hour day. It's such a potent tool. Here's a reflection I jotted down about this topic. Below is a screengrab of "connecting with my village" via a Zoom call with my sisters, an aunt and an old friend.

Daily Zoom call, to pray, & catch up with each other
Copyright 2020 Abe Pachikara

Living Mindfully - 9 tips

Here's a few points that I thought are good, quick reference as we hunker down in our homes.

1. Perspective - choose how you see your life
2. Kindness - towards yourself and others
3. Compassion - be in the shoes of others
4. Acceptance - resistance is futile
5. Composure - let go of impatience
6. Communication - engage gently
7. Appreciation - smell the roses
8. Dedication - stick with it
9. Presence - live more aware of each moment

Closing thought, part 1: from British philosopher, Alan Watts

There is merit to the underlying idea - - learning not to think in terms of gains and losses. Life's too nuanced and complex, no? Here's an observation and timeless story I hope you like.

Observation: The whole process of nature is an integrated process of immense complexity, and it’s really impossible to tell whether anything that happens in it is good or bad — because you never know what will be the consequence of the misfortune; or, you never know what will be the consequences of good fortune. 

Timeless story: Once upon a time there was a Chinese farmer whose horse ran away. That evening, all of his neighbors came around to commiserate. They said, “We are so sorry to hear your horse has run away. This is most unfortunate.” The farmer said, “Maybe.” 

The next day the horse came back bringing seven wild horses with it, and in the evening everybody came back and said, “Oh, isn’t that lucky. What a great turn of events. You now have eight horses!” The farmer again said, “Maybe.” The following day his son tried to break one of the horses, and while riding it, he was thrown and broke his leg. The neighbors then said, “Oh dear, that’s too bad,” and the farmer responded, “Maybe.” 

The next day the conscription officers came around to conscript people into the army, and they rejected his son because he had a broken leg. Again all the neighbors came around and said, “Isn’t that great!” Again, he said, “Maybe.” 

The farmer steadfastly refrained from thinking of things in terms of gain or loss, advantage or disadvantage, because one never knows… In fact we never really know whether an event is fortune or misfortune, we only know our ever-changing reactions to ever-changing events.

Closing thought, part 2: 

Of note, it's well worth our collective time to pray for the health of all the front line workers across the world. Nurses, EMTs, doctors, fire fighters, etc., but also grocery workers, those in warehouses, driving trucks, etc. They all make our world go round the "right way" in the face of COVID-19.

And... pray for all the folks whose medical procedures are delayed and in limbo. Give them strength.

Here is where you can find related posts.

Have a wonderful day.