Here’s a quick update from my musings and activity in the week ending Dec 2 on this adventure back into PTCL-NOS.
I have been in Southern Illinois at Mom’s place since Wednesday for the Turkey Day holiday. Now, Mom is next to me on an Alaska flight winging back to Seattle. She will be “local” for the rest of the treatment regimes. Luke Skywalker had Yoda and Obi Wan Kenobi. I have Mom who is the Zen master I lean on, and Dad sending me stories and jokes from some place faraway, like Obi Wan. Everyone needs characters like this when they run headlong into a malady, no?
The past week was blustery, as my sisters, brother-in-law and I helped Mom identify the best 67 or so watercolors for an art show that opens in January at Southern Illinois University’s Art Gallery. “My last show!” she declared a number of times. She’s as artistically productive at 80 as she was 35 years ago. You can see examples of her work at www.marypachikara.com.
Quotes I Kept in Mind Last Week:
“Thank God ahead of time.”
Father Solanus Casey, beatified in 2017 and 1 step from saint hood.
God grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference.
The inimitable Prayer of Serenity by American theologian Reinhold Niebuhr
Finally, We Stop Planning and Testing, and Take Action!
- Fri, Nov 22: Deep Prayer. I don’t have the intensity in my prayer that this situation calls for. I pray in many moments throughout the day. But not with the force that pushes down walls. So I resorted to the Indian Catholic Group at my church. If you could earn something as pedestrian as black belts for prayer, here’s where a collection of athletes of prayer make entreaties and invocations to God. The upshot: deep, soaking, prayer.
- Mon, Nov 25: Round 1 of 6 Rounds of Treatment. Few things will give you a bias for action like a fast moving malady. THANK YOU to my cousin Niseema graciously came with me for the infusion of Folotyn. It was odd. Why? Because 3 years ago, the chemo I received (known as CHOP) took around 5 or 5 1/2 hours to complete. As example, I watched the entire day of the Republican national convention. (Chemo + the RNC was quite a combo for myself.) How about Folotyn? 5 minutes. What? Done? Already? Nice! It will take some weeks to see if my lymphoma responds but I was super exhausted with the mental wrestling with Dr. Chen about his unilateral points of view. A HUGE thanks to Dr. Puronen for landing treatment slots.
- Wed, Nov 27: Super Foods. My sister Susan and brother-in-law Chris brought a bona fide juicer and each day made variations of the same baseline of ingredients. Ginger. Lime. Arugula. Swiss chards. Cucumber. Celery. Pears. Granny Smith apples. Some vintages were too tart, or too gingery. But some were pretty damn fine. I thought it needed some alcohol to really tie it with a bow, but… not now. 🙂
- Wed – Sun, Nov 27 – Dec 1: Home Cooked Foods. As can be the case in many Indian homes, for Thanksgiving, we skipped on the venerable turkey and fixings. We all love it. But… instead came a steady flow of home cooked Indian food, and American fare, all of which was divine. All based on cancer fighting ingredients like cruciferous veggies and shitake mushrooms.
- I always assumed I would always be symmetrical when I compare the left and right sides of my body. But not now, not even close. My left belly is that of a guy weighing another 25 pounds. It’s again fluids that are not moving as they should. It’s pretty weird.
- Same for my limbs as mentioned last week. My right leg is steadily swelling, and my left arm has at times been so expanded the skin is tight, literally like a balloon. Some people’s bodies are contoured because of working out and diets. Mine, right now is a mild version of “lymphedema“.
Experimenting on Myself
- My buddy Sebastian in Munich tossed out an idea. “Abe, why don’t you see if some established studio in Seattle has some kind of Thai massage for your swollen arm? If the masseuse is cute, all the better.”
- That led to a few phone calls to massage studios near me. Lo and behold, there’s something called “lymphatic massage” but it needs a doctor’s permit. And it’s $135 for 60 minutes. I think I would need lots of sessions but I’m too damn cheap to pay that!
- Next was YouTube and some very dry videos on how this lymphatic massage works. Like this one and this one. One mentioned “after several months to a year, your lymphedema will be less.” Hmmm, a year? What could be faster?
- How about gravity? I stuffed 4 pillows under my left arm one evening so it was pointing upwards. Next morning, my arm and hand were visibly more slender. Nice.
- How about a compression sleeve and gravity? Wow that was even better.
- How about a compression sleeve and no gravity? I got rid of the pillows and only relied on the compression sleeve. Yikes, what a disaster. My left hand looked like one of those clown hands.
- Clearly there’s a hierarchy. Gravity first, always, Abe.
Facing Down a Scare
- Two rules of thumb are central for t-cell lymphoma, given it is an immune issue:
- No Tylenol or Ibuprofen. If you get a fever, the medical community needs to know. Don’t suppress it.
- If your body temp is more than 100.5°F, go to the emergency room. Anyone with kids or any history of sickness knows 100.5°F is NOT very warm.
- Saturday early evening, I realized I felt warm. I was categorizing the scores of Mom’s paintings and had forgotten myself. The reading? 101.2°F. Damn.
- But to me, the LAST place to go is where there are colonies of super bugs – the ER. Let’s first try something else – take an honest shot at addressing this. After a quick dinner, I followed Dad’s age old advice – – “Few things reduce a fever like fluids and sleep” – – guzzled a few glasses of water and took a 2 hour nap.
- The thermometer read 99.5°F. What a relief.
- Vigilance is the better path so one never has to dig out of unforced errors like this.
- Sunday I was better to recognize the warmth. 99.9°F. Fluids. Sleep. And the temp was back down.
Meet Inspiring People as Part of the Treatment Regime
- I think old friends are anti-cancer agents, unto themselves.
- Most everyone has that ONE job they feel was the best to date. Mine was during 2 summers of my college years, working at a summer camp for physically and mentally challenged. “Touch of Nature.” I worked with different populations of campers, young and old – blind, deaf, violent nature, mentally challenged, cerebral palsy, etc.
- Yes that work assignment as a camp counselor.
- But the true brilliance behind it, in my opinion, was the camp director. A big hearted, smart, garrulous, laughy mountain of a man named Butch Davis. His wife, Laura, is equally enthralling. That was 38 years ago. But we always kept in touch.
- They had moved back to the area near my home town, after retiring from faculty positions at a college in Pennsylvania.
- I called and they dropped by.
- Do you ever feel a room gets larger, brighter, certainly louder and crackles with optimism when some personalities enter? This is always the case with these two. I don’t know how they do this. But it happened again when they came to Mom’s place.
- It made for a magical, meandering conversation on Saturday.
Benchmarks for Toughness
- Who’s the toughest person you know? One who is undaunted? Someone who demonstrates how to wrestle with life?
- Mine is Mike Ryan.
- He was a camper at Touch of Nature, in his late 40s or perhaps 50s. Had pretty acute cerebral palsy (CP). CP basically disconnects commands from the brain to the muscles. Mike’s brain is clear, but his body is prisoned to a wheelchair, and needs someone to feed him, bathe him, take him to the bathroom, and clothe him. Fact is, Mike changed my view of things at the first meal where I needed to feed him.
- But had had this twinkle in his eyes. Always. And he’s one of those guys who cracked a joke every 10 minutes from morning to night.
- For days on end I struggled to understand his slurred speech. He would patiently repeat his very, very funny punchlines as many as 5 times. When I sorted out what he was saying, I would always chuckle and I noticed he mumbled something. “What was that Mike?” I asked and finally learned his comments was, “The timing’s all gone to hell.” Like a true comedian, delivery is central.
- How would Mike deal with the lymphoma? Seriously, for sure – he was a very smart guy and would recognize the gravity of this malady. But he would not be consumed by it. Life is big, abundant, bodacious and fleeting. Why miss a minute?
- The tenet Mike exuded thru his actions was, “My body may be broken, but my life’s pretty damn good.”
- Here’s to Mike, no?
Thank you for how you are making these days flow by more smoothly. As example, John Devadoss dropped me and picked myself and Mom up from the airport. And the parents of the Interlake HS Cross Country team commence a MealTrain this week. Tremendous, no?
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