Adventure #2, as of Feb 12

Hi Folks,
Here’s an update from my musings and activity from the last 3 weeks on this adventure back into PTCL-NOS.
Quotes I Kept in Mind Last Week:
The matador beats the bull. The bull is the strongest. The bull hits the hardest. But the matador is the smartest…
Muhammad Ali
Have courage for the great sorrows of life and patience for the small ones; and when you have laboriously accomplished your daily task, go to sleep in peace. God is awake.
Victor Hugo
The gem cannot be polished without friction, nor man perfected without trials.
Confucius
Make the best use of what is in your power, and take the rest as it happens.
Epictetus
Thanks You’s
Top of the list is Mom, who tirelessly takes care of the house and my needs. She pesters me in good ways like, “Did you take your morning medicine.” Now she asked it 15 mins ago and while I may find that tiresome, well, all too often, I probably did NOT take my morning meds 15 mins ago when she first asked. So thank you, Mom. Also thanks to my sisters Susan and Cindy, for helping with logistics from far away. As example, we have family clamoring to visit so Cindy put up a Google sheet to coordinate who comes when. Thank you to my sisters Susan and Cindy, to Joy Uncle, Monikochamma (aka Aunt Anna), Regi Auntie and cousins Ashley and Petey for making visits from far away. Thank you to all who call, text, WhatsApp and email to check in. To John, Shannon, Joe and Anne for chauffeuring Mom and I thru inclement weather to procedures. To Anne for the seat cushion to help by beleaguered butt. And of course, thank you for your prayers. As you’ll see below, I think that’s among the most powerful medicines.
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…My tumors are overall much smaller – say 30% the size prior to “round 1” of the chemotherapy I received on Jan  18-20. This is due to recent research at Fred Hutch Research Institute that developed at a 3 chemo cocktail, called TEC, that is more effective and less toxic. (We call that the “therapeutic window” and this one is way larger.)
  • Lymphedemas… Also, the very vivid swelling of my left arm and legs has passed away. I think enough lymph nodes are functioning to move the interstitial fluids as intended. At one point back just before the chemo, my knees were as wide as the arm rest on a living room couch. My thighs were jiggly with fluids. It was certainly a trippy moment to see all this and wonder “how long will this last?” (I have since learned that when the lymph nodes in your underarms are removed – – this occurs for breast cancer related procedures – – it can result in permanent lymphedemas for the arms. Gosh.)
  • Energy is rising even if I have far less muscle tissue (more below). Yesterday, I went on my first walk of a mile. That’s a dramatic increase from when I struggled to walk from my living room to the bathroom a mere 8 weeks ago.
  • Blood chemistry… The one area of struggle is my bloodwork. Here’s the problem, stated like an SAT sentence: A dose of chemo flooding the bone marrow is like a large hammer striking upon soft wood. Each additional dose, or strike, creates chaos. There’s only so many times you can do this before it (bone marrow, or wood) never recovers. The problem is that I need a number of elements of my blood to return to higher levels before I can A) have a Port Catheter surgically implanted to use for future chemo treatments and B) then receive more chemo treatments. Good blood chemistry is vital to my treatment.
  • Heart rate… Before the malady, my resting heart was perhaps 60. I was pretty proud to have a steady but slower rate. Now it’s still around 110. And that’s when I wake up in the morning. Not sure when it will come down.
Musings
Ricochet #1 – Clothing and Body Weight
I am writing to you wearing jeans. For the first time since mid-December. Why could I not do so until today? Because my tummy had swollen so much that the only usable clothing I had were sweats and a pair of cargo pants that had an elastic gather, akin to toddler clothing. Similar for my swollen thighs. I could not get them thru the leg holes of my underwear. Nuts! I had to get larger and larger size underwear to accommodate the girth of my legs. Same for my feet: shoes were out of the question. I could only stick the front half of my feet into my Keen sandals, but without socks, for the past winter months. (Oddly, at some point in 2018 I had bought size 12 work boots from the local Goodwill store – – these could house my bloated feet! So I occasionally wore these massive beasts to get around with my feet fully covered.)
But to quote a famous saying, “this too shall pass.” Now I re-define “skinny.” Now, I am swimming in my jeans like never before. Same for the rest of my clothing. Why? Because as the lymphedemas collected an ocean of water, my body was converting any fat and muscle tissue it could find to meet the ravenous energy needs of the cancer. Then the swelling subsided and I am left with the skinniest physique of my life.
Progression: the tumors; the tummy; the tissue in my upper chest
Copyright 2019 Abe Pachikara
Upshot: my body weight went from around 172 (where it’s been for 15 years at least) up to 186 with all the fluid gains, then down to a whopping 144 as the fluids and swelling departed. This emaciation and muscle loss occurred in the past 2 months while I was distracted by all the swelling from fluids. Pretty sneaky and nutty, no?

Note, I have wanted to lose about 5 pounds for years and years and pretty much failed. Then an invading disease outdoes my best efforts by what, nearly 600%? I think of Yosimite Sam in Looney Tunes saying, “Whoa mule, whoa mule. When I say whoa, I mean WHOA!”


I now weigh less than my teenage sons. The difference: with all the running and conditioning they do, my boys have proportioned, sculpted physiques. Something that would inspire Michelangelo. My body looks like something from The Cat in the Hat. It’s pretty odd.
Richochet #2 – Blood Work
As mentioned, the chemo treatment has been scrambling my bone marrow. Perhaps it’s akin to when a football player gets hammered in a play – it takes a while to get his bearings again. As one example, here’s some numbers for my platelets, which are central to clotting when you cut yourself.
  • 323,000: that was my platelet count just before my 1st round of chemo. You want it above 100,000, so I was in a healthy place.
  • 35,000: that was the count two weeks after the chemo, on Wed, Jan 29.
  • 4,000: that was the count the following Monday, Feb 1. Sheesh. So I spent 4 hours to get infused with one bag of platelets to get my count artificially up to 24,000.
  • 20,000: this was a good sign. Platelets don’t last, so this # indicates the marrow is generating its own population. 
  • 123,000: by Monday, Feb 10, we are back in a positive range. Nice.
I Miss My “Polar Bear” Fat
I am constantly feeling chilly. So while at home you’ll find me with a blanket draped around myself. On errands, it’s layers of clothing. Why is this occurring? One reason is I have no insulation in the form of body fat. But that raises the question – – gosh, did I have THAT much body fat before? I mean, I never felt chilly before. Hmmm.
I Miss My Glutes
Yes, your gluteus maximus helps power your legs and other good things. It (and other tissue) also lets you sit for long periods of time. I have nothing but bones on my rump right now and so I have to insert a cushion like this one between me and whatever I sit on. I have a newfound respect for big butts.
Family Visits – the Minimum Recommended Dose
For myself, few things are as good as visits from the immediate and extended family. I get along with all of them and love to see them. WhatsApp is fantastic for those very far away (think India, Dubai, etc.) but in-person cannot be beat. To be clear, I have a LARGE extended family – I did a count last night. The sum of all my aunts, uncles and 1st cousins is 51. It’s a different kind of good medicine to sit around with them, shoot the breeze, break bread, compare books, movies, videos, games, etc. and maybe visit a bit of the local highlights, like the snowcapped Cascade Mountains, about 40 mins away.
Of note, like any good medicine, I shared that the minimum dose (for myself) is 48 hours. Longer is better and perhaps there is an overdose level but given today’s busy lives, the more common problem is people cannot stay long enough. To be clear, I think Mom, as the caregiver, gets 2x the goodness I do from the joyful distractions of good hearted visitors.
Actions Speak Louder Than Words – is Prayer Important To Me?
I have had a question pestering me for some time. If I keep saying to all of you, “pray for me, it’s one of the most powerful medicines,” why am I not praying all that much? I mean, actions speak louder than words, no? Yes, I say short prayers thru the day but to be clear, they are VERY short. Like, “Dear God, I hope the blood work results are better today.” That’s perhaps 5 seconds?
Then a good catalyst occurred. Regiauntie suggested we dial in and do a daily rosary at 7:30 pm for the rest of that week. She left for a trip to India but Mom and I still carry on with this ritual. I love the meditative cadence that is created. It’s made me more aware that, goodness, I do need help, both to cure this disease, and to have the fortitude and serenity to carry on thru these days. The mindfulness is a precious thing, no? And, perhaps, my actions to a little better job to show prayer IS important to me, no?
Strength is going up
Back in mid-January, I struggled to walk from the dining room to the bathroom. And I can promise you, I was VERY motivated to get to the bathroom in a swift manner. Standing up from a chair took as much 5 minutes to work up the determination as it was no small feat. But with the 1st round of chemo, I feel that the lymphoma’s hammerlock on my body and also on my mindset was broken. Mom and I walked a mile yesterday. I was slow, and puffing when trudging uphill, but it was still a magical mile. There’s much more to do, and the next 3 chemo cycles will be akin to 2 steps forward, 4 steps back. I’ll take it one day at a time.
Here comes the hairloss!
Okay, yes I am bald. But there’s eyebrows, and facial hair. Just today I realized, “Hmmm, I have not shaved in 4 or 5 days…” A 5 day shadow? No, that’s hair loss at work. Not much to shave. Some people are very disturbed when this occurs. That’s where baldness is a good thing. I endured the whole trauma of hair loss long ago. 😊
Rough Gameplan
Last Thursday, Dr. Shustov clarified “what’s next.” 3 more cycles of TEC chemo, followed by an allogeneic stem cell transplant. But there’s a number of hurdles to this journey:
  • I need to go into full, squeaky clean remission from the current chemo treatment
  • Insurance has to agree to pay the ~$1 million price tag for the transplant treatment
  • I need to find a donor who is a good match
Closing Request
As you may suspect, critical to my success is to complete the upcoming cycles of chemo in a timely manner. Without that, I don’t proceed to the transplant stage. If you would like to narrow or focus your prayers ( for those who find prayer is your preferred approach ) then, pray that my bone marrow can handle all the cycles of chemo, and do so in a 3 week cadence.

Progression: 173 lb – late Nov 2019; 144 lb – late Jan 2020
Copyright 2019 Abe Pachikara

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Have an awesome day.

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0 Comments

  1. Josephine February 28, 2020 at 10:15 pm

    Hello Abe,
    We continue our prayers and are focused on the you getting through the 3 rounds of Chemo, the impact on your bone marrow and positive next steps.

    I am simply gobsmacked at your Belief and Faith in prayer and a Higher Power. Thank you for your inspiration here.

    Way to go on that mile walk! That must have felt invigorating.

    God bless,
    Jodi Ewen-Burke

    Reply

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