Here’s an update from my musings and activity from Dec 23 – 31 on this adventure back into PTCL-NOS.
Quotes I Kept in Mind Last Week:
“Dear God, give me wisdom, I am very much in need of it for this moment.”
“I pray I am with you in the baptism of today.”
Abe, many times a day
To Mom, my sisters Cindy & Susan, and brother-in-law Chris for making the Holiday Week so nice. And special kudos to Chris for a real life version of the Netflix show Maria Kondo – he doubled the free space in my garage. Just amazing.
I have completed all six infusions as of Dec 30th and had a PET scan on the 31st. (However, I just got a note that the PET scan equipment had a failure – – it is contained in a truck trailer that drives from one Kaiser facility to another – – so my plan to avoid a 2020 cost by squeezing this in 2019 is a bust. Plus it means more radiation to my body that I would have preferred avoiding. What to do?)
Things seem about the same. The oncologist indicated that B-cell lymphoma responds rapidly to the biological drug I am taking, Folotyn, but T-cell lymphoma is much slower to respond. Assuming the cancer does respond to it. So I need to sit tight.
Meanwhile, the lymphoma still triggers low level fevers that rise above the 100.5°F allowable limit. I am now 4 for 4 in terms of visiting Urgent Care in the past 4 weekends. Nothing happens fast on these visits – they take from 4 – 8 hours. The one saving grace is Mom and I saw 1 1/2 seasons of The Crown on Netflix as we waited for results of blood tests, cultures, xrays, and ultrasounds. Thank goodness for streaming TV services.
Doubts and Questions
The ongoing mental baggage from the lymphoma has unsettled me at times. It’s at a low level but I “see” my unease lurking in the shadows of my house, like an uninvited guest. To help counter it, I just learned of and have ordered two books: Fear by Thich Nhat Hanh, and Awareness by Anthony de Mello. Perhaps they will help reframe my outlook.
Slow Leak in a Buoyant and Optimistic Balloon
I am humbled by people with long-term, chronic pain. I have short term, chronic irritations, not pain. My left underarm’s tumor has an uncomfortable sensation. The skin on my chest has bursts of itchiness. My swollen leg feels stiff when walking. My bloated tummy makes small meals feel like I have eaten 3 deep dish pizza slices. Again, all are irritations. Nonetheless, the effect is akin to poking a small hole in a balloon that is your constitution or disposition. Or a determined beaver chewing away at the foundation of a log cabin.
What’s that like? Day to day living is less shiny. Food, comedy, conversation, errands are dulled. It goes with you everywhere, like a cheap suit. I am astounded by the mental feat of people who live with chronic pain for long periods.
The one blessing? I am that much more aware of how good my health has been, literally for decades. Even unremarkable days are better than winning the daily lotto.
Regardless the irritations, there are times where you need to ignore them and treat some moments for the special, fleeting status they hold. During the Christmas week, I did not do that – – I let the discomfort get in the way and was not the host I could have been. That’s a shame. (I think back to a saying by a wrestling coach with a heavy Boston accent, “Coulda, woulda, shoulda, 3 words of the loosa.” ) It was the first time having everyone here since 2010. Sheesh. Uncommon moments require uncommon effort. Overall, I give myself a “C-” grade.
Actions Always Speak Louder Than Words
After much research, for our trip to India I had secured a driver from a company called Swagatam Tours to take us from New Delhi to Agra and back. Then I sent a note saying I need to cancel the trip due to the cancer. I asked if he has a cancellation policy.
So, what was the response of Mahi, the owner? He replied in about 15 minutes. “So sorry to hear this, I have refunded your fees using the payment tool you had used to forward the funds.” A 100% refund. When I go back to India, I will most certainly get a driver from Mahi.
[ Note: this blurb may have “too much information.”] Last Friday, I emerged from the shower and did something I never do: I spent a long time on a full visual inspection of my body. One surprise – – I have wrinkles on my butt. And, it is greatly diminished to boot. Why is this a surprise? I have run long distance from age 13 to 37. Then from age 45 to now, it’s been a mix of running, long walks locally and hikes in the Cascade mountains. The upshot: at the least, your lower body is toned from your legs to your glutes. Oh my gosh, what a site. This is me? Really?
Then, 2 words raced thru my head – – Machu Pichu.
As some of you may know, since the first round of lymphoma, I have decided to visit places I think would be hyper-interesting, and bring the boys to expand their view of the world. Hence: the Galapagos; Angkor Wat; the country side of Vietnam; etc. In the back of my mind, I planned to visit Machu Pichu, Peru right after Paul graduates from high school this June.
But Machu Pichu is 8,000′ above sea level, Cusco11,000′, and the nearby Rainbow Mountains are 17,000′ above sea level. I need ALL my glutes back, and 130% of my prior stamina. In truth, a laughable notion – – I cannot walk more than a mile now.
So… maybe Machu Pichu in 2021? Something flatter for now like Cinco Terra? Winnipeg?
Thoracic Something or Other
My entire life, I have slept on my left or right side. For the past 12 weeks, due to the tumors in my underarms and the need to drain the lymphedema in my left arm and right leg, I have slept on my back. How confining!
On Friday, I decided to sleep partially rolled to the right. Ah, how nice. That is, until I awoke an hour later with a piercing pain each time I inhaled. A few ribs on my right chest were singing a harmony of agony that would have impressed groups like the Eagles. I was wide awake, massaging those muscles and bones, but with no success. Fuck it hurt! What is going on? What is doing what to what? In desperation, I sat on the edge of the bed. And, the pain vanished. 100%. How is this possible? And why don’t I know?
That’s when Dad came into my mind. He had an encyclopedic knowledge of the human anatomy and would have told me something about how lying down, muscles are needed to lift the rib cage and chest cavity, but how everything changes sitting up. I am making this up but he would have pointed at his own chest and said something like, “Lying down, you use the diaphragm and the internal and external intercostal muscles – but when you sit up, it is mostly the diaphragm. This was first discovered in 1847 in Edinburgh by a gifted surgeon named…”
Why do I know so little about my anatomy? Why do most us know so little? We have one body. If, as Warren Buffett said, you could buy any car at any price, but had to use it for the rest of your life, how would you take care of it? How well would you come to know it? But we have one body. We just don’t really know diddly about it, right? Nor take care of it like it has no replacement. Isn’t that a great example of ignorance?
Manual vs Automatic Pumping
When we get out of bed, for the most part we just walk to the place we had in mind. No issues. It’s as if something is making sure all the right fluids are getting to the right places. Some manner of automatic apparatus gets enzymes, proteins or whatever to the right destination.
But my leg with the lymphedema is more like some old two stroke motor – that is, the oil and gasoline can easily get held up, and then each step is akin to manually pumping this mix into the cylinders. The automatic mechanisms can get sidelined.
The downside – – pain. The first step has a piercing pain as I put my weight on it. Wow! The second step is about half as bad. The third step? One quarter as bad. The fluids are pumping and the nerves who act as snitches when there’s an issue are settling down. If you watch me, it’s akin to a pirate on a stump leg, hobbling in the dark to the bathroom
I pile two big pillows to hoist my legs at night. Next to them to build a ramp is a rolled-up, dense wool blanket. But I think it was pinching some parts of my swollen leg. So, I swapped out the blanket for a poofy pillow – problem solved. The pillow did not pinch something or other somewhere the way the blanket did.
This is a topic that really bothered my Mom when I mentioned it to her. But here we go anyway.
Since I was about 16, I have always considered the worst-case version of a problem I am facing. So, in my current situation, what’s the worst case? Perhaps that none of the treatments work. Then what?
Well, 60 Minutes recently had an episode – – it is a worthwhile 13 min video to watch. They discuss tests underway in places like Johns Hopkins to see help people with addictions and extreme depression. The results are still early but remarkable. Why? It appears to give people a far broader context of where their own existence is in the backdrop of life. ( Last year, I read “How to Change Your Mind” by Michael Pollen about psilocybin – the hallucinogenic substance in magic mushrooms that triggers wild dreams, and it’s influence on people’s worldviews. )
No I am not depressed. But if the treatments go sideways for myself, it’s an option I will certainly consider for navigating my situation.
2019 – Report Card
All of this MUST sound so dreary. But it is a very “cancer only” micro view. Overall, the year of 2019 was magnificent. Mom has prepared a massive show of about 70 watercolors akin to these – the opening is Feb 21, 2020. Cindy has a new place in Detroit designed by Mies van der Rohe. Susan and Chris are swimming along. My boys are healthy, both taller than myself, traversing high school with a good balance of academics, sports, and social. Travel in 2019 was out of this world – to Normandy and Paris with Mom and the boys, and to Hong Kong, Vietnam, Cambodia and Singapore with the boys, including a visit with dear friends in Singapore. Work has been steady for me. And despite my hermit ways, I was invited for the 2nd year in a row to participate in a Chicago / Booth School of Management event for incoming students.
So, the cancer has been like an annoying flat tire on a long, merry road trip. Nothing more. As said before, “My body is broken, but life is grand.”
So here’s to a grand 2020. It will be wild, unexpected, and it’s own Indiana Jones-style adventure. Relish the ride.
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