Hi Folks and a belated Happy New Year!
My journey into the world of PTCL-NOS continues…
First off are the thank you's to for your full-court press against the invading malignancy…
- My parents and sisters, Cindy and Susan, and Susan's better half Chris.
- To Dr. Mahnaz Lary for her succinct, yet nuanced and upbeat counsel all along the way - so consistent it has been something I have come to assume, frankly.
- To my extended family and good friends spanning from all the way back to my high school years, to colleagues who keep tabs, pray, and are so very supportive.
- As always, the SCCA teams have been instrumental. My deepest thanks to not only Dr. Andrei Shustov, but also the folks in radiation oncology led by Dr. Kenneth Russell, and the sure footed surgical work of Drs. Erin Kirkham and Albert Merati from the otolaryngology team at UW med center. (Otolaryngology is the polysyllabic replacement for ENT, or Ears, Nose and Throat - certainly sounds more mysterious, no?)
- We are certainly in a better place than last May. Specifically, testing indicates the 6 rounds of CHOP chemotherapy + Folotyn did materially counter the lymphoma. That was the present I received just after Christmas and a big one, for sure. Here's how we proved progress.
- Back in December the PET scan had an ambiguous result for my tonsil where the initial cancerous lymph node was identified - - 3.8 SUV meant we may have be a false positive (looks like a good reading but in truth there is cancer) or false negative (looks like a bad reading but in truth it's just a metabolically active tonsil, nothing more).
- So I underwent a tonsillectomy on Dec 27th to gain access to and really study the cell tissue using a flow cytometry test.
- Upshot: The malignant lymphycytes are below detection, great news. So we set aside the "nuclear option" and proceeded with "conventional weapons" - radiation.
- Now I am in the midst of radiation treatment: 5 days a week for just under 4 weeks.
- Immunity is on the rise - WBC is 4.4k - you want it between 4.3k and 10k
- Stamina is rising in advance of the radiation which prob will depress it
- "Retail" cost is $215k as of December 20 bills, $1.9k is my out of pocket costs (these figures don't include the costs covered by the drug trial, which is another $54k for the Folotyn as the per dose cost is around $4.5k).
- Grace under pressure: Concurrent to my treatment, I wallowed into an indescribable loss when my dad's prostate cancer came back with a vengeance, particularly from October onward and on Jan 1, he passed away. In truth, 2017’s first profound blessing was that he was released from what grew into an unspeakable catastrophe. He was so many things including a relentless medical professional, giving me cool-headed advice in late December even as he was engulfed in pain. As a retired surgeon, he knew what was coming and never complained, a deafening detail when I look back on those months. Think of a horrible work assignment dropped in your lap, again, that you know will mean extra hours & stress, and carries possible career limiting risk (at MSFT the word "mid-year review" would raise such visions). That's the farm leagues. The big leagues: a relapse of cancer that you understand only as a surgeon would, which steadily dismantles your body; yet you stay constructive and peaceful, and don't complain. Yet again, dad is one of the unparalleled benchmarks in my life.
- Information on a "Need to know" basis. I have witnessed once again that too much info, too soon, is certainly a burden. Particularly in healthcare. And a good medical professional continuously balances how much info to share, and when. What nobody needs, be it the patient, the family, or medical team, is a patient mentally careening unnecessarily between outcomes that range from rare to typical.
- Living with an unanswered question. "Which pathway would I be taking?" was the million dollar question I had to set aside in the Holiday Season, to the extent I could. Dr. Shustov had outlined two roads: a radical procedure versus a more conventional one. The PET scan did not definitively point to one path or the other. The tonsillectomy and related tests would not occur until late in the month. Until then I needed my mind to not wander into speculation that would be worrisome. Loosely speaking, it was like to last June all over again, when the details of the lymphoma were unclear.
- Option 1 - Going nuclear: Consider removing jewels and valuable possessions from a palace, detonating a bomb within it to obliterate the crooks and thieves, then bringing back the precious contents so the place returns to its fabled splendor. That was the planned pathway if the flow cytometry test indicated the left tonsil still had cancerous lymphocytes: we would know the chemo to date had been insufficient in the lymph node in my tonsil and therefore in other lymph nodes too. The procedure is called an "autologous bone marrow transplant," - - it entails removing a sample of my own bone marrow, then releasing a massive pulse of chemo akin to detonating an atomic bomb against my own immune system, in the hopes it obliterates anything malignant. A day after this internal Hiroshima, we would return that precious vial of bone marrow to my body to regenerate a new immune capability. And then, I would recuperate over the next two to three months.
- Option 2 - Conventional Weapons. "Radiation" is a term many are more familiar with. At SCCA, the specific approach is called Intensity Modulated Radiation Therapy (IMRT) which can deliver a radiation dose shaped to the tumor or target area. In the image below you can see an extract of the planning document, and see in the line graph how the desired organs have a curve that maps high and to the right, while the ones to avoid are low and the left. We are now in the midst of Option 2.
- Chaos = when the cops mistake everyone for a crook. I asked Dr. Shustov, "if we do a bone marrow transplant, why would I use my own bone marrow?" In my head, transplants come from someone else. Oncologists call this category of transplant "allogeneic" but it's far from a silver bullet. The reason is fascinating, stemming from the fact that immune systems are like our thumbprints. All are unique. The issue is organ rejection at a grand scale; literally civil war. If I were to get the bone marrow from someone else, this new immune system very possible will "see" many parts of my body as invading entities and lash out selectively but continuously, particularly against the lungs, liver, skin, GI tract and even the immune system itself, with often deadly results. It has a name too - "Graft versus host disease" or GvHD. The patient may receive drugs to lower immunity and suppress the new immune system, but that risks attack by real, external diseases. What to do? Again, I am struck by the delicately balanced ways of the body and the daunting nature of doing good without doing harm.
- Mucositis was a great training ground. The UW otolaryngology team clarified that adults result in a "lot of pain" from tonsillectomies. "You will probably sit at home, it will be that bad." Great. I had tickets with Paul and Sidd to Rogue One for the day after the operation, at Cinerama no less. In my simpleton view of the world, this would be akin to missing Hamilton. :) But the wound simply felt like one more round of mucositis. I think the prior bouts of mucositis had braced me. In fact, I never took the opioid drugs they gave me, which was preferred as I have no room to risk any manner of the disastrous wave of addiction cursing so many in our country. (And we loved the latest episode of Star Wars.)
- Fear fights with logic and nearly wins, again (a battle with my own demons last week.) After last Tuesday, I think I better understand how one may use old fashioned fear during torture. My lesson came from radiation session 1, which was a doozey. To make all the radiation sessions consistently repeatable, the SCCA team made a relief of my head and face out of a Kevlar mesh about 3 weeks ago. Seemed like a good idea; for breast cancer, they tattoo 3 dots to similarly guide the radiation gear. But tattoos are a bad option for the face, right? Now here's where things get spicy: I don’t recall anyone explicitly telling me they would be clamping my head down, and what “clamping” would really mean. Perhaps they did and I just did not fully understand. Or, perhaps it was the “need to know” thing mentioned above. Either way, I was in for a juicy surprise. The team of experienced, affable pros place my custom mask over my face and fasten it down, hard and fast, totally immobilizing your head. As per the design. It is so brilliantly form fitting I feel I have perhaps 1 mm of movement, total. From the neck up, I may as well have been set in concrete. Instantly, I realize my head is used to moving up, down, left, right on a whim. Nobody, but nobody, tells the head what to do. Until now. Plus, my mouth cannot not open. My eyes are held shut. And to add to the fun, I am congested so breathing thru my nose was sketchy at best. So this will go on for 15 minutes? Seriously? I hear the machine's mysterious whirring, clicking sounds; I sense colors from something shining on my closed eyelids; my blanket feels way too hot; the piped in blues music is grating on my nerves. All traces of composure have dissolved away under that bald head of mine. Crazy thoughts leap into my mind, "Oh my God, how do I take this off if I need to? Damn, they never showed me. What if they leave the facility? Say there's a fire. Or a mandatory fire drill. Or like in the show 24 a terrorist attack hits SCCA radiation oncology theatre 2." Then logical thoughts rush in to steady the situation, "A fire? A terrorist attack? Seriously? I am definitely going crazy. These are skilled, helpful, nimble people, the equipment is world class, my arms and legs are free. AND, AND, let's not forget friggin' Premera approved the cost of this procedure, do you realize how big that is? Just breath slowly." So I try this. 4 times. The nutcase in me emerges, again, "Okay this self-awareness breathing BS is not working! When do we man up and get help?" Logic is scrappy and scrambles, "No worries, just say a rosary, that will work." I try and find I cannot get past sentence 3 in the Our Father, a prayer I have said perhaps 20,000 times. Seriously? I feel I am about to crack and ask to stop the radiation. The nutcase in me is spiraling upward again, "Oh my God, THIS is how it is going to be? Can you see it??" Logic thunders an order, "Puh-lease, shut the f*** up, come back from cuckoo land. Go back to breathing. Do it 20 times before you think about ANYTHING." And that slowly brings some manner of calm. Just barely, to be clear. I am thinking, what is going on? The intercom comes to life, "how is it going there?" I mumble and grunt unintelligibly, which of course they interpret as "just fine" and the session pushes on… So back to the torture comment - Aleksandr Solzhenitsyn’s famous “Gulag Archipelago” comes to mind. If my experience was a well-intended session, how many powerful, dark tricks can be unleashed when someone has bad intentions in mind? Good gracious me.
Again, Some Refined Goodness
We are what we think.
All that we are arises with our thoughts.
With our thoughts, we make the world.
The Lord is my shepherd, I lack nothing.
He makes me lie down in green pastures, he leads me beside quiet waters, he refreshes my soul.
He guides me along the right paths for his nameʼs sake.
Even though I walk through the darkest valley, I will fear no evil, for you are with me; your rod and your staff, they comfort me.
Your task is not to seek for love, but merely to seek and find all the barriers within yourself that you have built against it.
Abou Ben Adhem, by James Henry Leigh Hunt
Abou Ben Adhem (may his tribe increase!)
Awoke one night from a deep dream of peace,
And saw, within the moonlight in his room,
Making it rich, and like a lily in bloom,
An angel writing in a book of gold:—
Exceeding peace had made Ben Adhem bold,
And to the Presence in the room he said
"What writest thou?"—The vision raised its head,
And with a look made of all sweet accord,
Answered "The names of those who love the Lord."
"And is mine one?" said Abou. "Nay, not so,"
Replied the angel. Abou spoke more low,
But cheerly still, and said "I pray thee, then,
Write me as one that loves his fellow men."
The angel wrote, and vanished. The next night
It came again with a great wakening light,
And showed the names whom love of God had blessed,
And lo! Ben Adhem's name led all the rest.
Gosh January is nearly over! I do hope it has been a great, new, clean start for each of you. As always, hand out more hugs and kisses than you intended - there truly is no time like the present.