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…
- 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.
- 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).
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:
- Infection related risk – – that is, while undertaking the stem cell transplant and being severely immuno-compromised, one could acquire COVID-19.
- 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.
- 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.
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| With Dr. Shustov before starting “round 4” of chemo… Copyright 2020 Abe Pachikara |
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| Daily Zoom call, to pray, & catch up with each other Copyright 2020 Abe Pachikara |
- Perspective – choose how you see your life
- Kindness – towards yourself and others
- Compassion – be in the shoes of others
- Acceptance – resistance is futile
- Composure – let go of impatience
- Communication – engage gently
- Appreciation – smell the roses
- Dedication – stick with it
- Presence – live more aware of each moment
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.
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