I do hope this note finds you in a good place. My PTCL-NOS journey has come to a notable place – the end of radiation. I am deeply, deeply blessed to be ending a round of cancer treatment alive and writing about it, no? What’s left is recovery from the collateral damage, and smiling into the sunlight at the end of this tunnel.
Let’s start with the all-important Thank Yous
- First off, to my mom who is out here for the radiation phase and a terrific companion in this stage of the journey. She has been through a lot and still keeps on pushing the boundaries of a very vivid life.
- To my sisters, Cindy and Susan, Susan’s better half Chris, and to my dad on high.
- To my extended family and good friends for your prayers, thoughts, and good words sent via email, text, letters, cards and Facebook.
- To the SCCA team in Radiation Oncology led by Dr. Kenneth Russell, Dr. Stephanie Schaub, the folks at the front desk (Rowena, Renee, Chloe, Christine) and a large team running the radiation theatres. Yet again, SCCA has demonstrated itself to be a collection of pros who are nothing but smart, skilled, helpful, upbeat, great listeners, and fast on their feet .
- The radiation treatment is done and over with. Daily sessions, 5 days a week, for a little under 4 weeks. Part of me says celebrate that this set of battles was victorious (knowing the war may percolate up again), the other part asks "exactly how?" as I cannot eat much anything and certainly taste nothing.
- WBC (white blood cell) is down at 3.8k for unclear reasons. I have had a bit of a cold, but targeted radiation should not be stressing the system. (The desired range is 4.3k and 10k)
- Neutrophils are holding steady at 2.02 (desired range is 1.8 – 7).
- Stamina is similar – a bit low and it will be a focus going forward. Perhaps related, RBC (red blood cell) is just below normal.
- My mouth is offline for all intents and purposes – more later on this.
- Moms are, well, moms, right? Mom, who is on her own journey given that dad just passed away, is still a caring parent in her own league. She would rather be creating her next watercolor than cooking, yet she has been relentlessly making up different concoctions to add flavor to what I eat. It all looks amazing but to her dismay, my palate (as in the roof of my mouth, along with other areas) is scorched with white wounds, so my palate (as in my near addictive appreciation for taste and flavor) is exiled to some lonely island somewhere in the North Atlantic for now. With a whimsical, slightly mischievous smile, she remains unfazed.
- Intended Damage = Higher Cure Rate. I hope the radiation is doing grave damage to the intruders running around on my premises. Taking this route was more of a hunch than fact based. Why? Early stage T-cell lymphoma is a rarity, so we don’t yet have the body of stats & established protocol to fall back upon. So we are making an educated guess, following the standard practice for early stage B-cell lymphoma: chemo delivers a 80% cure rate; overlay with radiation and you get to 90%. Time will tell where I land, no?
- Definition: "Cure Rate." When a surgeon such as my dad takes care of a broken arm, "cure" means that we won’t be revisiting this issue for the remainder of that patient’s life. One does not worry that the arm somehow finds its way back to fractured with the prospects of continuing to broken. But cancer is funny in that way – the millions of defying malignant cells have been beaten back, disbanded to the corners of your body like a bunch of cowardly, pesky varmints – – yet they may mobilize again. "Cure" in this case simply means you are still alive after 5 years. To me, that’s akin to a 5 year lease on a fabulous car like this sensuous ’55 Mercedes Gullwing and which I may need to bring back in 2022. If you had such a deadline, where and how would you drive it? Such a thought either causes one to go "yikes!" or to say, "hey nothing is certain anyway, shame on me if I get complacent." To borrow from a career planning phrase, "what will I do in the next five years" takes on a different gravity.
- …Then There’s the Collateral Damage. Fast dividing cells are more sensitive to radiation (just as earlier, they are to chemotherapy). So, cancerous cells get the brunt of the blow as they divide the most rapidly. But… healthy mucous membrane splits faster than your average cell so it also gets caught in the crossfire to a lesser but measurable degree. That can be one’s entire mouth. Ouch.
- Collateral Damage = Progress. With radiation, I now know there is no way to precisely measure the damage to the cancerous lymphocytes. What I do see, and even more so I feel, is the increasing damage to my mouth. In truth that is goodness, as by proxy much more radiation is slamming the target location deeper in my throat where the "bad actors" are hiding out, and being hurt by it (that is the hope). In all this, yet again I feel I am a lucky one: I had under 4 weeks to my radiation regime. Say prayers for the people with 6 or 7 weeks of this, 5 days a week. And at higher radiation levels.
- Food devolves from form, flavor & flair, to blunt caloric function.
- Level 1 – "Gentle" food. Gone were aromatic, spicy Indian dishes, taco truck fare accented with Habanero sauce, crusty pizzas with a healthy dose of pepper flakes. I quickly shifted to chicken bone broth soup, with 2 eggs stirred into the boiling fluid, then mushrooms and spinach. It’s actually tasty and aromatic.
- Level 2 – No sense of taste. None. The bone broth / egg drop concoction has only a tactile quality to it. It took 2 whole days for me to figure out why the food was so funny. Even my mom’s sambar curry, an Indian mainstay and something I could eat daily for the rest of my days was lifeless. No taste, truly. Man, I do hope this comes back! You learn to not count on much anything except what you have, right now. Certainly a useful lesson, no?
- Level 3 – Pain from most anything. The collateral damage of the radiation builds and overshadows much everything. Even the benign organic Gala apple is too acidic. Can you believe that? One bite and the Malic acid races to the back left and roof of my mouth. The wiring in the mouth gets electrified by a hint of anything. Even soup with spinach is too "bumpy." Each soggy bit of green lights up my skin like a Geiger counter sitting on concentrated plutonium – – the answer is to blend everything with a maniacal vengeance. Eating is measured on 3 dimensions: blandness, particularly in terms of acidity and spiciness; wateriness so that I can rapidly drink my meal from a glass; smoothness so that nothing on the skin is chafed. Even then, each mouthful creates a burning sensation, best answered by a chaser of water after each gulp of watery mush. Water. Mush. Water. Mush. Always, always, end with water.
- Level 4 – I resort to local pain killers. Sigh. I feel I am cheating but the heat is on. Time to dial down a bunch of cranky hombres. The goal: momentarily suppress all sensation in the sensitive areas. Akin to blindfolds & earplugs for a child during an R rated scene. My choice: "Magic Mouthwash" from SCCA – equal parts lidocaine (think local anesthetic), Maalox (an antacid) and diphenhydramine (an antihistamine). Yes, you are you missing out, my friend – – it is indeed esoteric dining. 🙂 Swish for a minute, spit, rinse with water to remove the flavoring (but careful to not dial down the needed effect). Then, you know the routine: water; mush; water; mush…
- Level 5 – For me, the final stage is protein drinks. My “daily special” for about 2 weeks: an appetizer of Magic Mouthwash; followed by Boost, or Ensure, or a similar chocolate concoction from Costco. The only goal: calories. And since there’s no taste, there’s no need to add nuance, say cinnamon, honey, brown sugar.
- Level 6 – But again I am lucky, as I didn’t visit another, lower stage exists. I really cannot imagine the experience for people with 6 or 7 weeks of radiation. I find my diet boring, but it is certainly not extreme. Some people need to resort to a feeding tube from the stomach, that punches right out the front of one’s abdominal wall, bringing its own costs: your throat and esophagus are not used as much, which can have near and longer term issues. Arguably as bad is a nasogastric feeding tube that goes up your nose, down your throat, to your tummy. Yet again, there truly is no free lunch.
- I must not forget, this is war. Back in Sep, Dad regrounded me when I was calling out the possible woes of radiation. As the battle-hardened surgeon, he factually stated, "don’t forget, you are treating cancer." Doh! How easily I move off the "P-zero" priority. That’s why dad was the steadfast doctor, and I am the meandering patient, no? With that reminder, I recalibrate: I am good; this is a blessing to get the treatment; bolt my bald head down with that mask right out of Silence of the Lambs, fire up the linear accelerator.
- Here Come The Opioids, But Ever So Sparingly. Across all my treatment, one personal "no fly zone" has been opioids. I have enough nuttiness in my life, and perhaps I have listened to one too many a story of how opioids demolished the life of some goodhearted person. A neurotic view? Perhaps. But the only real downside to NOT taking opioids is a pain that’s far more fleeting than what’s created by getting tangled up in this class of drugs. Many a physician has told me there is no risk if you only use for true discomfort. Finally, after a series of nights of being up until 1 am, where Tylenol could not single handedly fight the battle, I caved in. But only for 5 nights.
- Another Example of My Lucky Streak. I have been receiving VMAT radiation, that is, "Volumetric Modulated Arc Therapy." It is even more advanced than IMRT. Here’s an interesting video of the general idea, where a linear accelerator creates the beam that is further tailored to the problem area.
- Unintended Contortions. I have noticed that I make squiggly body movements back and forth, when taking pills or eating, due to the discomfort. But these must look pretty nutty to the uninformed eye. You may think someone dropped an ice cube down my shirt. In truth, I am trying to guide the items away from the blistered areas, with limited to zero luck.
- Water is From Heaven, Truly. It washes most anything away, along with the inherent irritation. Acidity. Spiciness. Chunky meds. Little bits of food lodged as they normally would do, which now are absolutely intolerable to the rebelling surface area.
- Cell Phones are Great for Macro Photography. One late observation is how well a smartphone camera can capture subject matter in very close quarters. In this case, my mouth. Plus the LED light casts an even brightness. On a DSLR, it would take a pricey lens and even then, getting the light source into view would be tricky.
- Good Health is Life’s Analog to the Hard-Working, Under-Appreciated Employee. Think of someone who tirelessly, humbly juggles a million tasks. Year in. Year out. But, goes unnoticed. That is, until they leave. Then when all hell breaks loose, the mantra in the office is, "She [or he] also took care of this?? Really??" Similarly, in a hundred different ways, our bodies function without notice. Silently, fluently, humbly. So well, in fact, that we can end up focusing on other things, abusing our resilient selves in terms of diet, exercise, meditation, laughter, relationships, and prayer. My words are not new. But my personal, vivid re-discovery of this in so many, many ways is head spinning. With each treatment round, I now know something right under my nose will vanish and thereby shock me. I am like a fish that cannot acknowledge the water it is floating in. Truly the most obvious of traits departs, something so common and frequent I have ignored it for decades. For that reason, the cancer has been a blessing many times over as I have just marveled at what my body used to do, and for the most part, re-starts after a particular treatment regime ends. Here’s the observations from receiving radiation.
- Stretchiness: Our skin stretches all the time, every time. (I am not referring to muscles and limbs; rather to skin itself.) Radiation diminishes the skin’s stretchiness. You ask, "When does skin stretch?" More often than you would ever think. While radiating my throat, the back of my mouth does not stretch so I become very painfully aware every time I blow my nose, and with every yawn, burp, and sneeze. I am now also hyper-aware that come in unstoppable, rogue packs of 3 or 4 at a time.
- Tactile Senses Gone Amok: I don’t know why but food can no longer lodge between my gums and molars. Yikes! The upshot is a painful and super annoying sensation.
- Taste: Mentioned above.
- Wetness: The left salivary glands are hammered and broken by the radiation. Hence, it cannot taste, keep my mouth moist, or dislodge food caught in the teeth. In addition, the missing saliva would carry enzymes to break down starches, have bacteria to help fight germs, and proteins and minerals to protect my tooth enamel – now I need to use a prescription-only high fluoride toothpaste.
- But None of These Issues is Particularly Unique, Are They? Non-trivial maladies are everywhere – – literally everyone I have spoken to has mentioned that they have a dear family member or friend who journeyed through a catastrophic condition. Or they themselves did. Persistently good health can create a canonical example of the phrase "ignorance is bliss." My long, long run of good health created a profound personal obliviousness to the vast amount of sickness and suffering around me. Yes, I have an academic sense of many sicknesses in part as the son of a surgeon, but that manner of knowledge does not sink very deep into one’s persona. Missing in me was any real sensibility of the inconvenience, the worry & dismay, the dips & recoveries. And as important, knowing the downside of life makes the upside that much sweeter, and the trivial is even more irrelevant.
Again, Some Refined Goodness
Desiderata by Max Ehrmann (a favorite passage I have had in my wallet since high school)
Go placidly amid the noise and haste,
and remember what peace there may be in silence.
As far as possible without surrender
be on good terms with all persons.
Speak your truth quietly and clearly;
and listen to others,
even the dull and the ignorant;
they too have their story.
Avoid loud and aggressive persons,
they are vexations to the spirit.
If you compare yourself with others,
you may become vain and bitter;
for always there will be greater and lesser persons than yourself.
Enjoy your achievements as well as your plans.
Keep interested in your own career, however humble;
it is a real possession in the changing fortunes of time.
Exercise caution in your business affairs;
for the world is full of trickery.
But let this not blind you to what virtue there is;
many persons strive for high ideals;
and everywhere life is full of heroism.
Especially, do not feign affection.
Neither be cynical about love;
for in the face of all aridity and disenchantment
it is as perennial as the grass.
Take kindly the counsel of the years,
gracefully surrendering the things of youth.
Nurture strength of spirit to shield you in sudden misfortune.
But do not distress yourself with dark imaginings.
Many fears are born of fatigue and loneliness.
Beyond a wholesome discipline,
be gentle with yourself.
You are a child of the universe,
no less than the trees and the stars;
you have a right to be here.
And whether or not it is clear to you,
no doubt the universe is unfolding as it should.
Therefore be at peace with God,
whatever you conceive Him to be,
and whatever your labors and aspirations,
in the noisy confusion of life keep peace with your soul.
With all its sham, drudgery, and broken dreams,
it is still a beautiful world.
Strive to be happy.
Trees – Joyce Kilmer
I don’t think I will see
A poem as lovely as a tree
Poems are made by fools like me,
But only God can make a tree.
I do hope your January was a bold new one. We are halfway through February, if you can believe it. As always, hand out more hugs and kisses than you intended – there truly is no time like the present.