Paying for Treatments With Good Deeds

The immunotherapy I'll be taking (Ketruda/pembrolizamab) will cost $12,500 a month, and the treatments continue, I think, until it doesn't work or the side effects become too tough to take.  When faced with such costs (absorbed by you, my fellow taxpayers) against the three-quarter century that I've already lived and the unlikely possibility that the drug will actually be a cure, if I were a really good person I would go gently into the good night without imposing such a financial burden on society.  Instead, I'm perversely excited about the therapy. So, given my reluctance to leave this existence before first becoming one more economic tick, I resolved a few days ago to spend the rest of what life I have by Doing One Good Deed a Day.

The NPR program on TED Talks covered extreme altruism recently, with one of the researchers investigating people who donate kidneys to strangers. I decided this probably wasn't me yet.  For one, cancer patients are unlikely to be good organ donors, and, anyway, I wanted to build up slowly to extreme altruism.

Good Deed Day 1.  I never write thank-you or sympathy notes on actual paper to send out by snail mail, but I very much enjoy getting them from the few people who do (my older sister, a couple friends).  With this in mind, I bought three fairly costly boxes of Crane's notepaper several months ago. The first note I intended to write was to my terrific radiology oncologist and his nurses thanking them for the wonderful care they gave me last summer during my treatments.  The boxes sat on a table without expressing any gratitude or sorrow until Christmas, when I realized I could give two of them away as gifts.  This left only one to generate guilt rays. So, when I started my good-deed life, the first obvious deed was to finally thank the radiology staff. (I could have sent plants or a fruit basket, but they get that stuff all the time.  Nothing says thank you—literally—more effectively than a carefully crafted note.)

Unfortunately, I rarely write in long hand anymore except for signing an incomprehensible signature on the supermarket credit card terminal, so my handwriting has quietly deteriorated over time into an unbreakable Morse Code. Nevertheless, this was the only first good deed I could think of, so I persevered.

I typed out the letter first to use as a final copy that would not require any inky word changes.  I then placed a piece of paper flush against the sides of my note card to create a straight edge across it, serving as a guide so my sentences wouldn't drift up and down. Then I painstakingly scrawled what I hoped would be legible gratitude.  As I expressed effusive thanks to my doctor and his staff, I realized the note was going to be too long.  I left out a couple of charming but irrelevant sentences, and, even so I had to strangle the final line into tiny letters, with my signature riding up the right margin.  Then when I reread it, I saw that I had repeated one word twice, which I inked out in several cross-hatched layers until it was black.  It wasn't the best-looking thank you note in the world but it was done.

Later, Michael and I went out to lunch, and I told him to stop at the mailbox outside the post office and drop off the note.  It had been snowing the night before and he couldn't quite reach the slot.  The envelope fell onto a dirty hump of ice leaning against the mailbox. He opened the door and retrieved it.  The back was wet.

"It's not going to dry," He said.  "You'll have to redo it."

"No, I can dry it!"  I frantically blotted the envelope several times on my knee. 'It's just the back.  The front is fine.  I'll leave it in the car while we have lunch.  It will be fine." There was no way I was going to write this again. I left it on the seat.  When we returned from lunch, the note card was only slightly damp.  We drove by the mailbox again and this time the envelope fell safely inside, to be delivered in a few days to what I was sure would be the surprise and delight of the entire radiology oncology team. Good Deed #1 Done!

Good Deed Day 2.  Called an old friend whom I don't speak to very often because she talks far too long.  I spent an entire hour listening about minor problems with her car.

Good Deed Day 3.  Cooked at the Salvation Army, which I do anyway two days a week. I figure this will let me off the hook for coming up with a brand new good deed on Tuesdays and Fridays.

Good Deed Day 4. I was able to connect two young women together by email who recently moved upstate with their husbands.  Both are feeling isolated and looking for friends. I had been intending since summer to host a dinner for them and another couple, but things kept coming up.  They've now communicated and set up a date to get together, so I think that counts as a good deed.

Good Deed Days 5-15 (except for Tuesdays and Fridays). Have been distracted by weather, doctor appointments, various local Democrat meetings (possibly count as good deeds?), dinners with friends, and binging on the latest Great British Baking Show episodes.  Plan on starting good deeds again tomorrow or the next day…

Fishing for Programmed Death

The Memorial Sloan Kettering Cancer Center waiting room is well over fifty feet long and packed with patients and their companions. Everyone is here to see the Experts — for first or routine appointments or for second opinions on newly diagnosed or metastatic cancer (the latter the reason I'm sitting here). My anal cancer cells have slipped into the lymph system and showed up in the middle of my chest — not in the lungs but in the nodes of the mediastinum, which lies between them.  On the PET scan, the new tumor appears as a gleaming star, as if it were physical evidence for the fourth chakra and not a harbinger of my last path. 

Collective medical settings, like ERs, intensive care units, and this bloated waiting room, are the purgatories of modern life. There, uncertainty extends time and clouds consciousness and conversations. Couples and small groups whisper to each other between distractions — fidgeting with their phones, watching daytime celebrities shriek with inane happiness on giant TV screens, or staring into the darkness of their thoughts. Every few minutes, like a hostess in a high-end restaurant summoning diners to their table, an appealing young women strolls by calling a name. The doctor will see you now.  With a sudden blank expectancy, the targeted patient and his or her companions hoist themselves out of their chairs, collect their coats, and follow her to their destinies. 

The oncologist we are seeing is a cancer superstar, my referral obtained by a kind former colleague at WebMD who has worked with him.  He is pleasant, academic, straightforward.  He recommends waiting a month and a half before starting treatment, unless symptoms develop.  He doesn't think it will affect any outcomes, and it will delay the difficult side effects. 

We then discuss one of the new immunotherapies called checkpoint inhibitors, which I've been researching. From the work I did as a medical writer and editor, my image of diseases in general, and cancers in particular, has them swimming in a swamp filled with shifting molecular critters, moving up and down and back in forth among the innumerable layers of our organism. Researchers fish among the layers for the stuff on which these diseases feed or the entourages that protect them. Most of the time, scientists end up snagging pilot fish that may or may not indicate a direction toward their prey.  If they're lucky, however, they catch a critical snack or an important guard and look for treatments to neutralize it. 

 

I'm hoping the new check-point inhibitors may be such agents by blocking specific proteins known ominously as programmed death (PD-1 and its ligand PD-L1). When bound together, the pathway they form helps ward off attacks by the immune system. When the PD-1 combination is benevolent, it helps prevent autoimmune diseases by blocking immune attacks on healthy cells. When it occurs in cancer cells, however, these same protective actions become treacherous, preventing the immune system from destroying the foreign malignancies. 

Checkpoint blockers jam the PD-1 pathway and open the way for an immune system barrage against cancer cells. They are, in fact, proving to be effective in many different cancers, including melanoma and lung cancer, even if they have metastasized. One of these immunotherapies, pembrolizumab (branded as Keytruda), has recently been the first drug approved by the FDA as "agnostic", meaning it can treat nearly any cancer in which biopsies show levels of PD-1 proteins and other factors that could make it a good target.

The day after my visit to Memorial Sloan Kettering, my Albany oncologist calls and she gives me the results of an in-depth assessment of my tumor; it is chock-full of PD-L1 – 90%. To me, this means that pembrolizumab should head toward my cancer like a torpedo aimed at a ship full of explosives. She thinks so too, and after talking to the New York expert, will be treating my metastasis first with this agent.  (Ironically, if I were to be treated at Sloan Kettering, one of the world's best research hospitals, I wouldn't be using the new therapy first: I'd have to follow the current standard protocol: starting with chemotherapy, and, when it inevitably failed, follow with pembrolizamab. My Albany doctor, however, has more flexibility, and can start off with immunotherapy.)  

Although the New York doctor has recommended waiting for another month to stall the onset of side effects, now that I have the company of my programmed death proteins I am eager to begin this next passage. I hope that it will be a long one.