This is the last note (God willing) related to cancer that I will be sending.
The regime of chemotherapy & radiation are complete, and the upshot: any malignant cells are "below detection." Don't be fooled - they are still around, probably numbering in the hundreds of millions, but within a being with ~40 trillion cells, it's a scattered minority. Nonetheless, for myself, that's good news on an intergalactic scale. Further, I am lucky enough to send out my own "final" note.
The Dalai Lama once said, "Pain is inevitable. Suffering is a choice." The tremendous support by all of you made it easy to not choose suffering. Here's a brief that is intended to be as inclusive as possible.
My deepest thanks to…
- Mom and Dad, my sisters Cindy and Susan, Susan's better half Chris.
- Dr. Mahnaz Lary for her sage oncological guidance, particularly in those initial weeks and months where she was a resolute compass as I entered territory that felt unfamiliar and uncharted.
- My extended family of aunts, uncles and cousins, and good friends for your visits, prayers, thoughts, and good words sent via email, text, letters, cards and Facebook.
- The many people at Seattle Cancer Care Alliance and UW Med Center.
- The folks at Microsoft who made it painless to take a leave of absence (LOA), and supported that choice, starting with my boss Larry, Sheila our team's HR partner, and Genevieve who supports Microsoft LOAs.
- Two former bosses, Dennis and Scott, who gave great, sage, steady handed advice in those early, unmoored days.
- Thank you for divine providence - that the cancer appeared in a lymph node in my left tonsil, important as tonsils have nerve endings (lymph nodes themselves have none) and and became irritated from the swelling. Otherwise the cancer would have raged thru my lymph system (remember it was doubling each week), required a different treatment gameplan and perhaps had a very different outcome.
- Thanks for dad's daily monitoring and continuous support, regardless his own failing health. How wizardly were his skills as a physician? One time, my throat was oddly hurting; I woke him up for advice and without opening his eyes, he asked simple 2 questions, then said, "Do you have tums? You have acid reflex." and slipped off to sleep. Lo and behold, it passed within minutes of taking the Tums.
- Thanks to mom for great, logical advice. 6 years ago when I was feeling run down, on a phone call she asked me, "what did the doctor say?" to which I replied I was so busy at work I had not yet even made an appointment. Mom told me I was a fool to not act when Microsoft is providing me with a "Cadillac health plan." Too true. So when I got a scratchy throat last May, I did not wait. Thank you mom!
It is surreal to write this note - if you and I met up for a coffee, you would say I look pretty much the same from last May; as if had the whole affair not happened! How is that even possible? The answer: family, friends, prayers, help, a stubbornly hopeful mindset and divine providence. And so, I am still alive with the opportunity to complain about the weather, the traffic, the five times the elevator stops on the way to my floor at work, etc. But I have a clearer sense of what's trivial versus important for myself. And unexpected lessons, such as the blessing the lymphoma itself brought with it. I do hope to keep all of this firmly in my view going forward.
- The most recent diagnostic CT scan indicates that any and all instances of cancer are below detection. That's as good as it will get, and I will take that to the bank. A profound blessing has been showered upon me, no?
- White Blood Cell count (WBC) is back in the normal range (at the bottom end but the important implication is my bone marrow is organically making these without artificial stimuli of drugs like Granix).
- Same for neutrophils & lymphocytes - in the low end of the normal range.
- Red blood cell (RBC) count is a bit below normal but not a worry.
- Physically, my mouth is back to normal and no longer feels electrified from such benign things as toothpaste; it's still persistently dry but it gives a reason to drink water, a habit I need.
- Taste is still largely gone. To a galaxy far, far away.
- One patch on my left cheek has zero facial hair, exiled by the radiation. It's smooth like a baby's butt.
- Stamina is rising despite low RBCs. I am running again & did my first 5k race in perhaps 20 years. To be sure, it was not an elegant affair - - rather, it was such a slog my head wanted to pop off, but damn it felt good to cross that finish line! Note it is only one data point, and one point is not a trend, a surface or an object. More needed to prove anything notable.
- For my own posterity, five six procedures were undertaken: going under general anesthesia to have the port catheter installed in my chest; undergoing chemo & trial drug; going under to have the lovely tonsillectomy just before Christmas; undergoing radiation; & the recurring progress checks via PET & diagnostic CT scans. Lastly, I will go under to have the port removed in a week.
- Brace yourself: the "retail" cost (which I think is for folks who don't have insurance coverage) is $329k; cost to Premera, $212k; my out of pocket $6.7k. Not included is $54k worth of Folotyn covered by the drug trial, nor perhaps $5k - 10k for the upcoming removal of the port catheter.
- Jan / Feb were a doozy as costs were around $96k at retail prices.
- Each daily radiation visit was $4.8k, akin to the mortgage on a nice house.
A quote by Oscar Wilde has been in my mind, which goes, "Experience is the hardest kind of teacher. It gives you the test first and the lesson afterward."
I'll admit I have worried a bit about this blog entry. I hope it is the last posting about my own run-in with cancer, and with that in mind, this entry should carry greater gravity than prior writings, no? Or as opposed to a culmination of what my experience was about, is it just "one more entry"? Maybe that is the point actually - - "the journey is the destination" & there's nothing final about this post overall.
What are the lessons? Did I learn anything, or did I fail these 10 months in terms of personal growth? And will my growth come across in this post? Here's a handful:
- We own our situation. Whether it’s eating & sleeping right & staying healthy, or tracking down biopsy results, or mindfully choosing who will treat us, ultimately the buck stops with each of us.
- We control our mindset and how a situation is framed. Which in turn helps determine our disposition. Is it unfair to “happened to me”? Or have I had many charmed years, for which I am profoundly blessed?
- Family and friends are priceless. They may not change a medical outcome, but they can be a phenomenal suspension system for the winding ride ahead.
- Gratitude and reflection are vital antidotes.
- Every situation needs some whimsy along the way.
The deeper unease: did my "set point" change? Will I carry on in a different, better, material, & personally meaningful manner? I do hope so.
- My killer T-cells are coming back! The blood tests indicate my most lethal defenders are steadily back in business. Here's Dr. Shustov's impassioned description of one small part of our physiology… Your body is shrouded with 3 defense layers: an amazing external wall (your skin and mucous membrane); large hordes of less skilled infantry (white blood cells called neutrophils) and a much smaller, far more lethal set of SEALs, Rangers and commandos (these are killer T-cells). When you get a flu shot, the body rushes our memory T-cells to meet & learn how to recognize this kind of intruding, albeit dead, virus cells. Then, amazingly, these memory T-cells go to sleep, lying dormant in your body for the rest of your life. When a live intruder attacks, the immune system automagically awakens the specific set of T-cells trained to fight this particular disease, and produces millions of copies over the next 10 days. Think of that: millions of specially trained SEALs, created & mobilized in 10 days. That's why the pediatrician will tell you to come back in 6 days or so if the sickness persists - - most times by then the killer T-cells have done their job. More mind-boggling: if the SAME disease attacks again later, the awakened memory T-cells crank out 2 million of copies of themselves in just 2 days. Now, think of that: millions of SEALs, created & mobilized in 2 days. The T-cell counter attack is so rapid, and so vicious, you never even feel the symptoms of the sickness. My cancer was an attack on my very own T-cells, the crown jewels of the immune system. Hence, the focus on winning by myself, Dr. Shustov, and the SCCA teams. And as I said, my T-cells are back. Certainly, it is time to say prayers of thanks.
Pop Quiz: How long do lymphocytes & neutrophils live, on average?
Answer: Lymphocytes live the rest of your life; neutrophils live a mere 4 hours.
One implication: If neutrophils last 4 hours, & there's roughly 20 billion in your body, your bone marrow produces as many as 1 - 2 billion per hour!
- Things come, and things go. I have learned to be more aware that anything I have may be taken away from me without any rhyme or reason. Certainly, there's the obvious big tickets like family or friends, or your own life. More easy to miss are lesser, equally precious gifts so obvious they are right under our noses. Example: right now, I have little sense of taste. Never in my life have I contemplated being without it. And it departed without any fanfare. Eating is pretty trippy. Food looks amazing, people eating with me are visibly ecstatic about the flavors, and I can even smell somewhat well, but… for me the actual eating motion is a largely tactile exercise. ( Except for wine, which tastes weird perhaps because some flavor centers are working, others are not, and the sum total is bizarre.) Overall, eating today is akin to seeing in black and white. The upshot: I now have two important levels of awareness. The first is awareness of individual aspects of goodness, such as taste, seeing in color, the list goes on. The second is mindfulness of my access to that goodness, day in, day out, 24/7/365
- The body's design is beyond elegant. Everything, truly everything, is here for a reason. In the places where there is no redundancy, (for example - while we do have two lungs, we only have 1 tongue, 1 throat, 1 mouth) I have learned I cannot do without even one part of one system. When my tongue, or my throat, or my gums were wounded, I could not spit, burp, sneeze, cough, or take food. That's just one tiny part of the body.
- The pedestrian parts of life are its real glory. Cool vacations, glorious weddings and other such milestones are certainly precious. Yet, I now feel that the divine splendour is in the delightful little traditions of day to day living. I looked across about 60 hours of videos I took across the past couple of decades, and the phone calls, conversations at the dinner table, unremarkable gatherings, over time these gain a romantic momentum.
- Cancer is a devilish form of siege warfare at every stage. Essentially, a Trojan horse of 100 million ruffians at some point has entered the palace (your body) and they have quietly vanished into the woodwork, sometimes for decades, before finding an unwitting or sympathetic organ or system to compromise. Once they kick off their long awaited attack, it's a race - how far can they get before being detected? Once the crime is identified, external weapons are literally aimed into the core of the delicate ecosystem that is now a warzone. The military operation is well intended indeed, but for the love of God on high, the armaments do damage to many innocents. The tactics used are more indiscriminate that one would prefer, but this is war. We do put up with the collateral damage as long as the other side is hurt more. The difference between killing criminals and innocents is the "therapeutic window." If the cancer treatment's counter attack can occur early enough, and if the body is young and healthy (not overweight, not weakened by habits like drinking, cigarette smoking or lack of exercise), then the cancer procedures can be endured. But if combination is a bad one - - the cancer is advanced, the body is not sufficiently sturdy to handle the damage that will occur - - then the treatment may be insufficient. To quote from Game of Thrones, for each of us, "winter is coming" at some point for some period of time. Preparing is actually pretty easy: it's simply a matter of good habits (diet, exercise, sleep, stress, etc.) which you don't put off until "tomorrow.”
- What are some side effects when you get cancer treatment? Let’s be clear, treatment is vital. I would never hesitate to get it. Ever. And right away. Don’t go “Steve Jobs” and delay for years. Yet, "innocents may be caught in the cross fire." Here's a list of side effects; how my body fell apart to varying degrees during treatment (in parentheses is what a healthy day looks like and worth saying thanks for in your prayers)
- Exhaustion ( the opposite: you are at full stamina )
- Hair loss ( you've got hair everywhere, and I do mean "everywhere" )
- Weight loss ( what can I say, perhaps you're plump, but your plumpness = healthiness )
- No taste ( everything you eat tastes damn fine, only adding to your plumpness )
- Dark nails ( nice and pink )
- Dark tongue ( nice and pink )
- Numb, sometimes tingling, fingertips ( you can feel everything you touch, regardless how delicately )
- Frequent, long, embarrassing guttural farts ( no need to rush out of the room every 15 mins, right? )
- Very hard, uncomfortable bowel movements ( nope, you are good here )
- No stretchiness in the skin - so as example, it hurts to sneeze, burp, yawn and blow your nose ( you can reach as high up as you want, you can sneeze, etc. to your heart's content with no worry of pain )
- Super painful sensitivity in the mouth from the radiation ( no irritation from eating anything, be it pizza crusts or Thai dishes )
- 2 - 3 day bursts of mucositis after each full round of chemo ( all is good, your tongue, cheeks, throat, gums never complain )
- Find ways to be inspired to take care of yourself. Coming out of this adventure I do visualize myself as the lucky ruler of a benevolent land of 50 - 100 trillion citizens (the cells in my body,) organized into 10 systems which don't just work tirelessly but in mesmerizing symphony with each other to keep me alive and kicking. My responsibility: feed them well; provide them rest; protect them from external stresses via laughter, meditation, reflection, adventure. That way, they can focus on the work at hand. My part is pretty straightforward; their part really lies somewhere in the mystical.
- Unexpected blessings abound within our experiences. Not a new concept, but now I know first-hand that things we see as "bad" can bring their own goodness.
- My baldness - it cosmetically minimized the visual shock my sons would have had when hair loss really started. If I had dreadlocks (the idea makes me smile), going to bald would have been striking.
- The lymphoma itself - due to this disease, my parents spent 40 days of last summer at my place. 40 timely days given that my dad would soon succumb to a relapse of prostate cancer.
- Opening technology doors. How can I help other cancer patients? Perhaps these posts will be beneficial. But as another step, can I help the treatment itself? Perhaps. I found a team in Microsoft Research who use Machine Learning ( a part of artificial intelligence ) to help with radiation planning. And then connected these chaps to Dr. Russell, the Director of Radiation Oncology as SCCA, who has been taking care of me. Now they are muddling thru the paperwork to strike a collaboration between his oncology needs and expertise and their technology innovations. I am elated.
- Be aware how good "today" is. We do disregard the most obvious things. For most of you the following is true: you ate today; you see in color and in crisp detail; you smell things just fine; you taste foods with deep satisfaction & enjoyment; you are probably reading this note from a dry, heated or air conditioned space; if you want to raise your hand or turn your head, it simply happens. The list of the "obvious" is endless. Smile at this point, truly wallow in the grandeur of it. Just like my sense of taste vanished without warning, one or a few of these may vanish with no explanation & no goodbye letter, at which point they are a treasure you enjoyed but now fall into the list of the "Life is Epic" exercise.
- Better yet, notice the goodness over the years. Try an exercise I call “Life is Epic” - - one I undertook when I first got news of the cancer last May. It helped me avoid falling into a mental tailspin. Make 2 lists.
- List One: Summarize your treasures (things handed to you without any effort on your part, like parents, or health), time (experiences that deepened and broadened you), talents (something you personally nurtured further).
- List Two: Jot down setbacks, and be mindful that they are of a similar scale to the items on list 1.
- Now, compare the lists. I found my “List One” dwarfed “List Two” - it's one way to see how good life has been so far.
- Gratitude galvanizes you for the unexpected, hastily started trip. Realizing how good your path has been prepares one mentally for an "unplanned trip." Sickness. Carnage. Pestilence. Something else. And if so, how you weigh your life to date will influence how you deal with the trip.
- High Insurance Deductibles - a matter of perspective. Deductibles are evil and they are good at the same time. For people on a limited income, it can be very hard to meet say a $5,000 deductible (some are as high as $10,000). It is easy to have a prescription that costs say $300 which you need to pay out of your pocket, right now, with no prior notice. That is in ADDITION to the payments for your insurance premium. But when the s*** really hits the fan, when you learn your health has failed and will fail further, the coverage tied to the high deductible is a blessing. Even more so, healthcare coverage is vital unless your income is low enough to be eligible for Medicaid. In a mere 3 1/2 weeks this year, I racked up a whopping $82k in bills. Every day of radiation had a retail price of $4,800. That's akin to a monthly mortgage on a very fine house. But I was covered. Zero costs, after my deductible, that is. So again, high deductibles are a scourge and a rounding error at the same time. But some manner of meaningful coverage is like oxygen.
- We're all participating in a "reverse" lottery. A standard issue lottery is a fine thing. If you spend a buck, you have a 1 in a million chance to win a fortune. Serious sickness is the converse, with "better odds" - - perhaps a 35% to 50% chance that you or someone you love will fall ill and land a million dollar bill. Health insurance coverage is the whiz bang shield to protect our current, individual way of living. Your health coverage may not be what you had envisioned but shoot, it beats bankruptcy and worse, no?
- Mom, Dad, Doobies and Love. When my dad's relapse was really bearing down on him, I raised the notion of getting some pot to help with the pain. It's illegal in Illinois but extreme conditions require extreme measures, right? Dad was adamantly against any such notion, despite his tsunami sized waves of extreme pain, "That's not legal in Illinois, we are not discussing this any further." Mom was of a different view when I explained how it could help. Looking at companion, lover and confident, she said wistfully, "I would love if dad could come home, and we smoked some marijuana and just lie in bed together." Their persistent honeymoon, after 55 years, became so evident to me. I do wish he had come home, even if no pot was in the picture.
Again, Some Refined Goodness
It is easier to believe in Christ than to act like Christ. Strive for the latter.
‘Tis but a moment from the sublime to the ridiculous.
Pain is inevitable, but suffering is a choice.
No one would ever have crossed the ocean if they could have gotten off the ship in a storm.
David Steindl-Rast, a Benedictine monk
It is not happiness that makes us grateful; it is gratefulness that makes us happy.
Face to Face, by Rabindranath Tagore
Day after day, O Lord of my life,
shall I stand before thee face to face.
With folded hands, O Lord of all worlds,
shall I stand before thee face to face.
Under thy great sky in solitude and silence,
with humble heart shall I stand before thee face to face.
In this laborious world of thine, tumultuous with toil
and with struggle, among hurrying crowds
shall I stand before thee face to face.
And when my work shall be done in this world,
O King of kings, alone and speechless
shall I stand before thee face to face
Three requests in closing (2 old, 1 new):
- Hug your family and friends every time you get a chance. Easy to let that slip. We all die at some point, so relish this moment and make each one count.
- Try new things & get out of your envelope of comfort regularly. (In truth, this is actually the observation of a bald guy - - "Did I try that one?" is my rhetorical question whenever I see a cool hairstyle - - and usually the answer is no, sadly.)
- Look around at your significant others, extended family and friends, and at yourself, notice the hurdles we have contended with, and consider making a recurring donation to the foundations or research groups that are working hard to solve these hard problems. Set it, and forget it. Today. I doubt you will look back 10 years from now unhappy you did so. Need a suggestion? Donate to the T-Cell Lymphoma Foundation
THANK YOU for joining my unintended journey.
These posts are dedicated to:
- The happy warriors who battle with cancer on our behalf;
- Those who bravely experience cancer personally or in a significant other;
- And my dad, who was all the above and did so with peerless empathy, grace and courage. I have had the infinite good luck that you are, always, my dad, and that I can still lollygag with you by way of my memories of you and your stories, and again face to face at some point in the future.
Here is where you can find old posts…