My journey into the world of T-cell lymphoma enters the next leg…
First off are the thank you’s for your full-court press against the invading malignancy to…
- My parents and sisters, Cindy and Susan, and Susan’s better half Chris, who never take a break from my battle.
- Sebastian, who makes time for regular Skype calls from Munich, so much so I don’t think about it as out of the ordinary. Yet the Sunday calls are just tremendous, regardless if he is loitering at his abode after a tough week, or driving out prior to his Monday engagements in Switzerland, Austria or elsewhere.
- Jeremy, who retrains his consummate networking skills into regular touches from wherever he is in this world
- My cousin Rani and family for a care package – I do like much anything related to Muhammad Ali
- My next door neighbors, Judy and Billie Williams who bring over baked goods and even check in from the sunnier, warmer, drier American southwest where they reside during these months
- Aunts and uncles who routinely check in such as Monikochamma, Starlng Uncle, Tessy Auntie and Stephen Uncle, Joy Uncle, and Mercy Auntie & Ellis Uncle..
- Cousins on both sides of the family who call in, text, WhatsApp me, etc. such as Renju on mom’s side, and Abraham (Jimmy Uncle’s son, as I have 4 cousins named Abe. 🙂 )
- Longtime friends who have had close experiences with cancer or just shared very useful views to me, such as Terry, Esteban and Barb
- My former boss Dennis – a wizened Lymphoma survivor himself – for his observations when I send him random texts.
- Dr. Mahnaz Lary, whose oncology observations have been a timely & reassuring set of second opinions.
- Local friends who also check in and have provided much needed logistics, such as carting me to / from SCCA as I was prohibited from driving my own car home due to the lingering effects of anesthesia – thank you Anne and Jimbo.
- As always, the SCCA teams have been instrumental. My deepest thanks to Dr. Andrei Shustov, Karen Shaivo, Beatrice Franco, Hagar el Gadawe, Ariam and the rest of the infusion team, the folks in the pharmacy and blood draw are a start.
- All 6 rounds of chemo and trial drug are DONE. Finally, Halleluiah!
- The all-important PET / CT scan indicates my Standardized Uptake Value (SUV) score in my left tonsil has fallen from 13.4 in June; to 7.2 in August; to 3.8 as of Nov 30. Overall very good news. (SUV scores vary depending on the location being measured as some are more metabolically active than others)
- But a low number means the cancer is simply below detection. So we’ll further explore my left tonsil to determine the next action, be it radiation, or something else. This means a tonsillectomy which will be immensely painful from what I understand – not my choice for how to spend the Holidays. 🙁
- My immunity has gone full circle from fully collapsing to the slow journey back. Let’s start with the numbers: normal white blood cell (WBC) count is between 4k and 10k. When I took Granix for a few days in September, WBC jumps to 11.5k. Within a week of stopping WBC plummets to 2.5k. The pattern repeats: 7 days of Granix in October catapults WBC to a whopping 36.9k; 7 days later without, and I am at 2.5k, a week later at worrisome 490. A common cold would have flattened me. Shustov said it will take a year to rebuild sufficient legions of battle worthy lymphocytes and neutrofils, and I see this in motion: a month without Granix and WBC is 3.4k – a steady climb.
- Now that the last chemo was over a month ago, I am watching my body’s slow journey to normalcy – my walks don’t feel nearly as laborious, my finger nails have clean pinky bases, these freaky dark streaks of chemo in my tongue are gone.
- Re-forestation is afoot and I am surprised how much this tickles me for two reasons: the departure of a well-intended poison; I had not yet become accustomed to losing these features. Once again, I do need to shave almost daily, up from every 4 weeks; I am not quite so totally bald (but that’s a bald guy’s very nuanced view, akin to someone telling apart Merlots from 2009 & 2010); and in a mere 3 weeks my eyebrows have transformed from about 5 crazy, rebellious hairs (they were so long I felt they aspired to be Rastafarian dreadlocks) to a whole crop of little new guys. Wow. Left to its their devices, our systems are productive beyond description.
- Last but by no means least, I am back at work, which is terrific, to say the least.
- We are at $163k as of October bills (not including what the drug trial is covering, which I figure is another $54k for the Folotyn as the per dose cost is around $4.5k).
- What is it about poking yourself? The needles I used to inject a drug called Granix and elevate bone marrow activity were so skinny, in truth I barely felt anything. But man, watching me poke my own tummy was too much; I do wish I could have tracked my heart rate as the needle slid into my belly. On the upside, I hope this is one natural way I steer clear of the drug epidemics all around us.
- Hit Them Before They Get Away?… Do I, or do I not, get radiation as a follow-up? That has been on my mind for a while, assuming a good PET scan score. Back in June, Dr. Shustov introduced me to the "therapeutic window" – the difference between the good effects a particular treatment may render, minus the possible bad effects. GOOD: Radiation should further kill off cancerous cells who survived chemotherapy before they travel to other lymph nodes – – to coin a phrase, before "the cat gets out of the bag." BAD: Radiation to my tonsil risks collateral damage to: the left saliva glands (causing a dry mouth forever); the stem cells in the roots of some of the molars (perhaps requiring orthodontic work down the road); and causing painful mucositis near term. While an SUV # of 3.8 is very good to see, further obliteration of any lingering menacing cells is better, a la Marine General James Mad Dog Mattis, before they move to a new zip code in my body. to chart out this path, I will get the tonsillectomy next week – a (painful but valuable) Christmas gift from my treatment gameplan, no?
- Razor Blade as Geiger Counter. It was a bit funny to shave my face back in Aug – Oct. With so few facial hairs, if my razor blade acted like a Geiger counter you would have thought we were in a radiation free zone — each shave was akin to hearing maybe 6 "pings" in total. Just a handful of dangly, drug resistant hairs, living it up in the outback (until Mr. Gillette came along – sorry dudes). The whole task used to take about 12 seconds.
- Smooth Handoffs at SCCA, all day, every day. I am now totally accustomed to the terrific collaboration spanning at least 7 working groups – here’s a typical visit with 4 of them. Start on floor 1, to "access my port" (the catheter implanted just below the surface in my chest) for a blood test. Move to floor 4 & Hematology for a meeting with my oncology team about 30 – 40 mins later. The results of the blood test have arrived electronically and we review them as part of the check-in to ensure all is well. Before I leave, the team electronically requests the meds (CHOP + Folotyn). I proceed to Pharmacy on floor 5 to pick up some of my meds from THE MOST enthusiastic pharmacists I have ever met. (Yes, prescription drugs can be showcased with drama and passion like a chef describing a signature dish, unlike what I hear when at CVS or Walgreens.) Then I mosey over to Infusion where a team of consistently buoyant, seasoned rock-star nurses take care of my infusion. The remaining meds are delivered to my infusion bay to be administered thru the handy dandy port catheter. It’s just another day at SCCA. How lucky I am to discover this place, no?
- Eyebrows – Priceless? In late September, my eyebrows started journeying to a distant land. Sayonara. Adios. As I watched them fade away, the extent of my dismay surprised me. My eyebrows were that important, eh? I kept recalling a whimsical comment by my former boss Sean Belka, "Now, an overstuffed pillow with two chocolate chips for eyes has more features than me."
- Eyebrows – Part Two: Seeing my own eyebrows fade, and then return, brought back a wise choice I made years ago on a canonical spring break trip. At a party, I fell asleep – a frequent behavior in those sleep deprived years and very risky in the company of mischief. My impulsive fraternity brothers decided it would be remarkably funny to shave off half of my moustache. Much to their surprise, I awoke in the middle of the stunt, left in a huff and fumed for quite a while on the beach. I ruminated and iterated about the retribution. Shave all their heads? Too many guys, not enough time. Eyebrows? Better, but still not enough time. Just the left or right eyebrow? Hmm… certainly promising but many were interviewing and that may make for an awkward first impression, no? Okay so most guys’ eyebrows are poorly trimmed – – how about just nicking the left one to let each know what was possible? Yup that’s the plan. When I returned 3 hours later, everyone was asleep and I got busy: left eyebrows – nick; then crash elsewhere. Now looking upon my own depleted eyebrows with such surprising dismay, the nick was the better move. 🙂
- Hair – Priceless? Joy Uncle is a psychiatrist and on one of our long, meandering walks he mentioned how hair loss from cancer treatment depresses many of his patients. Being largely bald, I went through this micro scale Greek tragedy decades ago. But one of his observations struck me, "You want to know what REALLY depresses people?" Sure I said, bracing myself as he has had a penchant for shock humor. "When people lose their pubic hair. That is what really troubles them. Boy oh boy, my patients are so upset, it’s amazing."
- Getting to the Essence of a Tradition. Perhaps the lymphoma brings a more abstracted view of life – – my 2016 Thanksgiving was remarkable. Eye opening. Like no other. On two fronts. My dad, a retired surgeon spent the Thanksgiving weekend in the hospital, but now as a patient. After 81 active, intellectually curious, socially generous years, a bout of poor health he has treated often now gripped him in menacing ways. It is akin to running a fleet footed marathon race except for a very, very rough 100 yard patch near the finish line. That did not stop us from celebrating the Nov 24 tradition, just in a more conceptual way, with food from the hospital cafeteria, and his room as the place to break bread. I witnessed the essence of Thanksgiving: the sublime togetherness of being with people you care about. Two days later, another shining example: my sister Susan and her goodhearted fiancé Chris exchanged wedding vows in the same room in the presence of family. Again the same thing – I beheld the core essence of a tradition – – the rest is great but largely superfluous. Needs versus wants. Essential elements versus nice-to-have flourishes.
- The Unintended Journey is actually longer… than intended? When I think about it, that doesn’t really make sense. If something is unintended, unwittingly allowing oneself to put too much shape and pattern to it is risky. Yet back in June, my pathos and logos had settled on an end date of November for this little trip. A newbie error, perhaps? Akin to one’s first significant road trip, which took a few unexpected detours? In truth it is no different from any venture, be it relationships, kids, careers, hobbies, or businesses. Keeping one’s expectations somewhat de-coupled is healthy. Back in the 4th Grade, I remember seeing a quote on the front page of the Winnipeg Free Press I had brought in from the front porch. "Life’s what happens while you are making plans." True, so true.
Progression of the Left Eyebrow (chemo ended on 10/27)
Again, Some Refined Goodness
For all that has been,
For all that is to come,
The Grapes of My Body, Jalal al-Din Rumi
The grapes of my body can only become wine
After the winemaker tramples me.
I surrender my spirit like grapes to his trampling
So my inmost heart can blaze with glory.
Franklyn Delano Roosevelt
If you could kick the person in the pants responsible for most of your trouble, you wouldn’t sit for a month.
Look To This Day, Kalidasa
Look to this day:
For it is life, the very life of life.
In its brief course
Lie all the verities and realities of your existence.
The bliss of growth,
The glory of action,
The splendour of achievement
Are but experiences of time. For yesterday is but a dream
And tomorrow is only a vision;
And today well-lived, makes
Yesterday a dream of happiness
And every tomorrow a vision of hope.
Look well therefore to this day;
Such is the salutation to the ever-new dawn!
It’s not what you look at that matters, it’s what you see.Gitanjali, Song 76, 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?
General James Mad Dog Mattis
I come in peace. I didn’t bring artillery. But I’m pleading with you, with tears in my eyes: If you f*** with me, I’ll kill you all.
SIX UNDENIABLE FACTS OF LIFE:
1. Don’t educate your children to be rich. Educate them to be Happy. So when they grow up they will know the value of things not the price.
2. Eat your food as your medicines. Otherwise, you will have to eat medicines as your food.
3. The One who loves you will never leave you because even if there are 100 reasons to give up, he or she will find one reason to hold on.
4. There is a big difference between a human being and being human. Only a few really understand it.
5. You are loved when you are born. You will be loved when you die. In between, you have to manage!
6. If you just want to Walk Fast, Walk Alone! But if you want to Walk Far, Walk Together!
Bil Keane (shared by Master Oogway to Po under the peach tree, Kung Fu Panda)
Yesterday is history, tomorrow is a mystery, but today is a gift. That is why it is called the present.
I do hope all of you have a tremendous time on the Holidays. Hand out more hugs and kisses than you intended – there is no time like the present.