If Only Early Feminists Had Put Equal Pay on the Back Burner

IIn the early 1970s, I was a single mother in NYC with two small children. As part of left-over Johnson social and economic policies, day care programs were widely available in the city.  My kids attended a terrific center a block away from my apartment.  It was state and federally funded, and we were charged a fee based on what we made, ad infinitum.  The center was in a brownstone, well equipped, and filled with light. The caregivers were young, excited to make a difference in children's lives, and were paid a decent living, 

Then, under Nixon and the Republicans, it all changed. Mothers who made over a certain income could no longer send their kids to the center.  The cap was too low for private care, and most of us would be thrown back on welfare.  New York parents organized a protest and I called the local NOW organization and asked what they'd be doing to support us.  The answer was: "Child care isn't part of our platform."  

Reproductive rights and equal pay have remained front and center throughout most of the feminist era, with child care on the back burner. The primary objective of the movement has been to enable upper middle class women to enter the global corporate system as equals to upper middle class men. Working class mothers have been disregarded, with most of their jobs paying so little that equalizing their income with those of their male peers would be irrelevant anyway. Starting in the seventies, many of us lucky enough start out in the higher educated classes went into "career think" mentality, with our focus driven by money and a shallow meaning of success. We "had it all" and our kids had latchkeys.  

The essential problem is that men in the upper corporate ranks are making far too much, and bringing their female peers up to scale isn't the solution. Unfortunately, questioning this inequitable economic system driven by global corporate monopolies has never been part of feminist ideology. 

Think how different things would have been if a half century age the movement had made child care as much a priority as abortion rights. Mothers at all income levels would have had the same opportunities as men and their childless peers. Women who wanted to work wouldn't have had to start off feeling compelled to parrot male aggression.  Not to mention that we would have had a well-funded and universal early social and educational structure, which has gone missing for decades, that would have given kids of all races and backgrounds a sound and equal foundation. 

Impelled by the pandemic, perhaps this is changing now. However, maybe if feminists in the seventies had incorporated into their platform all aspects of our gender lives, including the consequences of reproduction, we wouldn't have such disparities, such elitism, so many Trump voters today. 

Cooking With Faye

"I was sent into the fields when I was six or seven.  Not to pick cotton of course.  I was too little.  My job was to carry water back and forth to my family.  It was hot.  Hundred degrees in Georgia is really hot.  Humidity is so high."  

 

As she talked, Faye was chopping up the onions with our chronically dull knives into perfectly even dices.  I was next to her swiping at potato skins with a Swiss peeler I had bought myself. 

 

Before the pandemic, Faye and I cooked together on Tuesdays and Fridays at the Salvation Army soup kitchen.  We're both over seventy years old and creaky with arthritis.  She grew up in the South and I in upstate New York.  We each escaped the places of our childhood when we were young women. And we have a great time cooking together.  Other than that, our lives couldn’t have been more different.

 

"There were seven kids," she went on.  "I was the youngest.  My mother and stepfather and all my brother and sisters picked cotton from six in the morning to six at night.  It was really hard.  My mother came home at midday to cook lunch and I helped her with that."

 

"Were you sharecroppers?"

 

"No. The plantation owner gave us a house to live in and $50 a month.  We had a vegetable garden too that provided all our food." 

 

"So, that's what you got for nine people who all worked twelve hours a day in the cotton fields?"

 

"When the season was over my brothers got jobs working in other farms and got paid $2.00 a day each. So that helped."

 

"What about school?"

 

"The girls got to go to school, but my brothers had to be around for baling the cotton and doing heavy work, so they didn't go as often..." She paused. "My brothers don't read very well."

 

"What was the owner like?"  I asked.  "Did you ever see him?"

 

He used to come to the fields every once in a while.  He was nice enough."

 

"Was he rich?"

 

"I think so.  He also owned the hardware store in town."

 

So, in the mid-fifties when I spent my summers swimming in the cold lakes near our house, Faye was lugging water in the broiling heat as part of a vicious system of exploitation that had hardly evolved since the days of slavery.  It just adapted, so that the expenses of its workers could be maintained at the same meager amount as owning slaves– maybe even less. 

 

Faye went on to describe how, when she was about eleven, her mother got fed up and went North for a couple years.  She got a job in a factory in New Jersey and saved enough money to come back and buy a plot of land at $50 an acre so that her family could leave the cotton fields.  It had a run down house on it, which they tore apart, using the lumber to build a new one. Her parents and siblings took other jobs and Faye grew up in that house until she got married.  After having three children, she and her husband moved north to Hudson to find work.  

 

"I got jobs in the factories here.  People used to complain about how hard it was, but after the fields, working here was a piece of cake."  

 

Faye was now in the process of coating chicken drumsticks in seasoned flour, preparing for their deep fry. Crispy on the outside and juicy inside, they are shockingly great. When she first made them at the Kitchen, I asked how she knew they were done.  "They float to the top," she said, "And then I listen to them.  When they stop sizzling, then I know they're cooked through." 

 

Faye is shy and modest about her cooking "It's just Southern." She says. "We did a lot of frying in the South.  Not very healthy."  

 

Faye has also taught me to make collard greens delicious (water, ham hocks or bacon, and a little sugar, then cooked for a long time) and encouraged me to try chicken paws and pigs' feet. (The chicken paws make great stock but I haven't gotten up the nerve to cook and eat either them or the pigs' feet).  

 

I stared at my spotty spuds now soaking in the huge cauldron that I'll use to boil them in.  "My potatoes still have parts of their skin.  And your vegetables look perfect."

 

"Oh yours will be good.  Add a lot of butter.  I mean a lot of butter when you mash them up.  They'll taste great."

 

Faye has a culinary tradition that relies on creating satisfying and delicious food from difficult ingredients.  And it goes back hundreds of years.  I have no culinary tradition, or at least none that should have continued beyond a single generation.  My mother was a fifties housewife with five kids and her idea of cooking was to get it over with.  Each night, she slapped a tower of Wonder bread on the table to fill us up.  Vegetables generally alternated between iceberg lettuce wedges sprinkled with sugar and something green and frozen and then over-boiled. Typically we had a dry roast chicken on Sunday and things made out of fatty ground beef on other nights.  Occasionally she tortured us with Spam or dried salty beef softened in milk and served over potatoes with canned peas. Velveeta was cheese. 

 

I liked to cook even as a kid and I took over the kitchen when I was about fourteen.  My first dinner was upstate goulash—ground beef in tomato sauce.  After I left home in the sixties, the culinary revolution recruited me through Julia Child and Graham Kerr (aka the Galloping Gourmet), whose enthusiasm and wit seduced me into a lifetime addiction to classic and ethnic cookbooks, filled with recipes that I never followed very closely, but muddied up with other ingredients I found in the refrigerator. Sometimes the food turned out ok, sometimes it was awful.  But without a backbone of family meals from a common tradition, I can only imagine what will make the people I cook for happy.  Faye knows, and can reliably reproduce her wonderful meals, time after time. 

 

At noon, the people come in to the Army's dining room for the lunch that Faye made today with precision and consistency, so that their long, difficult day could be fractured happily for an hour eating food prepared by a woman who cares deeply about it. 

  

As we were cleaning up after the service, Faye said. "Maybe I'll do pork chops next week.  I'll season and deep fry them like the chicken legs. Then I'll pour gravy over them and let them simmer in the oven until they're tender. "   She smiled, "They aren't very healthy but they're really good."

 

The dining room closed down during the pandemic and Faye and I went into quarantine.  It hasn't opened yet although younger people are cooking and packing lunches into boxes. Faye and I talk on the phone and I miss her and our work together.  Even if the center fully opens up again, I'm not sure I'll have the physical strength to go back.  Best job I ever had. 

The Army Needs You

Up until about a month ago I was one of the happy cooks for the Hudson Salvation Army Service Center, the only soup kitchen in Columbia County that serves lunches five days a week. Once Covid-19 slammed New York, being in a high-risk group, I had to self-quarantine (a loss only to myself).

The good news: lunches continue nicely without me, cooked by excellent unemployed chefs from Hudson's high-end restaurants. Instead of the former sit-down lunches held inside, however, the hot meals are boxed up and distributed individually outside. The center also still holds its food pantry on Monday, Wednesday and Friday, 8:00 to 10:00 am. On these days, two long tables are set up with bags on each containing meat, produce, and dry goods. Every family can take all three bags.

Until a month ago, generous local supermarkets and farms donated enough food, with a stockpile supplemented by the Regional Food Bank, to provide for the Center's lunches, the pantry, and often extra for other local pantries.

The bad news: Now, everything has changed. Within a week of the virus striking New York, the number of lunches increased from an average of 30 to 60 a day. And, as viral cases and unemployment increase, so are these numbers. (For example, today, a month later, 65 people came to pick up lunches.) More families are also taking food from the pantry, from about 45 to 55 on each pick-up day.

The Center is in trouble, with insufficient meat and dry goods on days with high demand. Mothers are coming in asking for diapers and formula, which the Center doesn't ordinarily carry.  The staff is working with Social Services to deliver food to the motels that house the homeless. Unfortunately the Center doesn't have the capacity to continue with these services without additional resource.

So what can people do? First, the Center could always use donations of dry goods (pasta, soups, sauces, non perishables). One can drop off bags in front of the Salvation Army Service Center at 40 South 3^rd Street, Hudson Monday-Friday between 8:00 and 1:00.  

Second, and more important, the Center needs emergency funds for food when it runs out, for gas for the delivery van, and for the diapers, formulas, and other non-food items that people now need. The Center Director would also like to give out gift cards at the pantry for milk, which is too heavy to carry. You can donate online or send a check to the Salvation Army, PO Box 746, Hudson NY 12534 or drop it off at 40 South Third Street.

Floating Between Scans

Last winter was very cold, and late in February the outflow of our new pond was jostled by heavy ice, allowing the water to slurp around its sides, pour down onto the road, and hustle across to fill up our neighbor's yard. The pond was down by about two feet.  I was deeply unhappy. If it couldn't be repaired by this summer, I wouldn't be able to jump into it.

When we were kids, my brother and sisters and I spent between Memorial Day and the first day of school bobbing and splashing in Crystal Lake, about a mile walk from our house.  Our mother taught swimming and we learned how to jellyfish float when we are all about four or five (hold your breath, curl up, and hug your knees). From then on, as soon as the temperature was over 70 degrees our environment of choice was that clear, fresh lake water.

After Michael and I started weekending up here from the City, in the summer I trespassed as often as I could across the road to our neighbor's almost lake-size pond. There, I did pretend laps, but mostly I floated on its cool back and communed with frogs, dragonflies, and carp, while keeping a wary eye out for the black snakes and snappers that occasionally surfaced near its shore.

So when we decided to move upstate after my retirement, we were able to sell the apartment we had lived in for 25 years at a price so inflated that we could both build a house and dig a swimming pond. It was finished in the fall before last year, fed by run-off and water flowing through a pipe from the artesian well that supplies our new home.  The pond covered about a third of an acre, with its deepest part about 9 feet. Michael built a perfect dock that licked out 15 feet into the water. The pond was all set for swimming, but, as it turned out, I wasn't.

My anal cancer treatments started in the spring of 2018. By summer my radiated bottom with its second degree burns precluded baths, and when I asked the nurse if I could swim in my pond, her horrified response suggested that I had wanted to stroll the sewers of Paris. So no swimming last year, but I was hopeful that the nasty chemo and radiation treatments would cure the cancer and I'd be in the pond this summer.

Unfortunately, no cure. Instead the PET scan in late fall showed metastasis to a lymph node in the middle of my chest, and the next one in February lit up two small spots in my liver and my lung.  Although unhappy findings, they did not preclude swimming this year.  The radiation burns had healed, with no possibility that I would have to endure those treatments again. I was also put on one of the newer immunotherapies, which, at least for me, has had no side effects so far and is allowing normal life. Because this therapy has been showing promise in prolonging life for a number of patients with different metastatic cancers and the pond was completely full, I figured I would still be good to go in the summer.

Then, the same month as that latest dismal scan, the pond leaked, and what had been 8 or 9 feet deep in the middle was now about 2 feet less.  Repairing the outflow could only occur in late spring or early summer when the ground around the pond was dry. This most likely meant draining even more water in order to make the repair right at the start of the hot dry time, when it was unlikely that the pond would refill to full capacity before the fall. No splashing this summer, and I couldn't count on the therapy working for another year, which meant no swimming maybe ever.

But, spoiler alert: last week I jumped into the pond. The upside to having construction done in upstate New York is that there are some incredibly competent and skilled workers. The downside is that there aren't many of them and they are booked into forever. And the upside for me in turn, is that the pond hasn't been repaired yet and it's June.  

Earlier this week, Michael suggested it might be deep enough to swim in. With great reluctance and doubt, I changed into a makeshift swimming outfit (underwear and a cotton shirt – I was not making any fashion commitment) and walked to the pond. I edged along the dock, now slumped down to the lower water level, and stepped onto the ladder. I had significant concern that I would be sucked into the scummy clay and drown disgustingly, so with great gingerliness, after getting to the lowest rung, I pointed my toe toward the bottom.  It didn't touch anything except water. No clay. No muck.

I flung myself backward and began to pull my way across the warm surface of the water in a modified crawl, scooping up the coldness below it.  I was eye to eye with some frogs perched on the surface, and I startled a green heron who was binging on their pals at the far end. The pond would be better with a couple additional feet of water, but this was just fine.

This is only the pond's second year of life, so I can lie on my back, arms out, supported by the watery floor, with no worries about nibbling carp or lurking migrant snakes and snapping turtles. No pond weed has yet grown through the muck to trap my feet. Dragonflies helicopter above, and frogs and skating bugs easily race me as I slowly drift past the new cattails. No one is alarmed. I am just one more animal.  Far overhead the deep blue summer sky, with its shards of clouds and anchoring sun, is the Mind that meditates for me.

So I will float through the hot days until August, when another scan will reveal the next path in the map of my fate. There is no cure for what I have, even if I can continue my wonderful immunotherapy. Eventually, like chemotherapy, it will no longer resist the malignancy, and my life will have its foreseeable end. So, this might be the only summer I have left, but that's ok. I've lived three quarters of century, and this month I swim in my pond. It's all joy.

The Things It Did Last Summer

I kept a log last June and July recording the effects of the pelvic radiation and chemo treatments I went through for anal cancer.  At the end of that summer, I told Michael I couldn't go through this again. But the brain's deviant kindness has replaced those tough experiences with memories constructed only with the muted lyrics of some other person's song. 

11-Jun-18
Started daily pelvic radiation for a month, 5 days a week. Also starting week 1 of chemo: mytomycin infused at hospital and then at home nurse attached chemo bag with fluorouracil (5-FU) for continual administration for five days.  

15-Jun-18
Chemo bag off on fifth day. Really nasty. Have to keep the bag on all the time, including in bed at night and had trouble sleeping. No side effects until today.  Had diarrhea, which stopped with 2 pills of Imodium and 1 more a couple hours later.

16-Jun-18
Regular movement. Went to see Deadpool, funny, then out to dinner. Sore mouth.

17-Jun-18
Sore mouth and throat. Salt rinse. Diarrhea and projectile vomit in morning. 2 Imodium for diarrhea and 2 ondansetron (Zofran) for nausea. Nap and cheese sandwich at 2 pm.

18-Jun-18
Severe diarrhea, and took Imodium twice. Vomiting twice, so also took Zofran twice. Was prescribed dexamethasone rinse for inflamed throat and mouth. Met with Dr. Savage. Tumors appear to be receding already. 

19-Jun-18
Saline Infusion in hospital after projectile vomiting along the Thruway on our way to Albany for radiation. Taking Zofran daily now.

20-Jun-18
Zofran preventing nausea, but mouth and throat sores still prominent. Took a steroid rinse (dexamethasone) for sores. Was told to increase water intake to prevent serious radiation side effects. 

21-Jun-18
Mouth sores receding but still can’t eat solids. Made avocado sorrel soup. Meds still keeping nausea in check. Now constipated.

22-Jun-18
Mouth sores better but still no solids. Cut back on Zofran and had watery movement. Stopped dexamethasone rinse, which I hate. Just baking soda rinse now. Hope it works.

23-Jun-18
Diarrhea and blood this morning. Took Zofran at ten and then at noon after another vomiting bout. Diarrhea resolved. Took Advil and ate chicken soup and rice pudding for dinner (yay). Took Zofran at 8:45.

24-Jun-18
Two Imodium at 11:30. Had two watery movements. Able to eat normal meal. Low appetite. Some mouth pain. 

25-Jun-18
Copious bleeding in AM in shower. Easy day otherwise. No bowel movement. Mouth sores almost gone. Could eat, although low appetite. Mowed flower garden.

26-Jun-18
Feeling good, but major bleed with clot in the bathroom of the restaurant where I was having lunch with a friend. Bleeding continued in afternoon. Mowed front lawn. Tiny bowel movement at nine.

27-Jun-18
Two ulcers in groin that need soaking in saline gauze. Didn’t notice them. Feeling good today. Constipation partially relieved with prunes.

28-Jun-18
Continued soak on ulcers. Increasing fatigue. Wearing skirt commando style, so nothing is touching my radiated pelvis.

29-Jun-18
Continue to wear skirt commando style. Very helpful. Took Zofran and Advil. Constipated. Had prunes in afternoon.

30-Jun-18
Bleeding at night. Prunes and yogurt for breakfast.

1-Jul-18
Prunes ended constipation. 

2-Jul-18
Feeling ok. Hair falling out in the car on the way to radiation treatment in Albany this morning.

3-Jul-18
Feeling ok.  Got my hair shaved off. 

4-Jul-18
Feeling ok. No radiation today. Holiday.  Yay. Wearing chemo cap.

5-Jul-18
Feeling ok. Decide to go bald. My head looks ok. 

6-Jul-18
Chemo effects from first week mostly gone. Applying lots of Aquaphor daily and often for radiation burns.  Still just taking Advil or Aleve for pain. 

7-Jul-18
Only Aleve and lots of Aquaphor today. Easy weekend

8-Jul-18
Same as yesterday

9-Jul-18
Nurse came to the house for second and final week of chemo. Infused Mytomycin and attached bag of 5-FU at 7:30 PM. Will continue again all day for five days.  Not looking forward to return of side effects.

10-Jul-18
Not allowed to apply Aquaphor before radiation and had intense burning on movement. Took oxycodone, immediate relief. Dexamethasone rinse four times and Zofran twice. Still hate the chemo bag but figured out how to sleep with it this time.

11-Jul-18
So far no mouth changes. Slight constipation with small movements. Continue regimen of dexamethasone rinse four times, Zofran two times. Oxycodone in the morning and Aleve twice a day. Have been wearing skirts commando for about two weeks now. Lots of Aquaphor.

12-Jul-18
Continue yesterday’s regimen. Changes from chemo make food taste like it was grown and cooked in a toxic waste dump. Maybe this is the way food really tastes like!  

13-Jul-18
Continue regimen but took 2 Oxy. Bag off at 7:30. Diarrhea and vomiting at night. 

14-Jul-18
Major explosive diarrhea and vomiting this morning. Took Imodium and Zofran second time after throwing them up. Cold and shakes. Slept and slept. Dry mouth.

15-Jul-18
Threw up/explosive diarrhea around 5 AM. Took Oxy, Zofran. Imodium. Had sips of Ensure at 8:00 am, which is sickeningly sweet. They should shoot whoever invented it. Nestle is the Evil Empire. Possible oncoming sores. Late morning more combo shit/vomit

16-Jul-18
Ongoing diarrhea, very low white blood cell and neutrophil. Can’t eat. Want to sleep all the time. Got Infusion in hospital for rehydration after radiation treatment.“You have no immunity,” doc says.  

17-Jul-18
Had another Infusion for rehydration in hospital today. Very painful burns. Boosted Oxy intake. Changed from over-the-counter Imodium to prescription Lomotil.

18-Jul-18
White blood cells tanked. Admitted into hospital at least till end of radiation treatment. Being pumped with antibiotics and morphine and other stuff. Peeing excruciating and makes me scream and cry.

19-Jul-18
Crazy morphine hallucinations. Want to remember how they alternate between dream and reality. Getting ant-fungal medicine for mouth sores

20-Jul-18
Last day of radiation! Still in hospital. Dealing with urination.  Getting meds for urinary tract infection (UTI) and thrush. Painkillers as needed, but they don’t really control acute burning. Still using bedpan. Trying to control muscles and release urine gradually. Walked to bathroom once. No spillage. 

21-Jul-18
Still hospitalized. Burning worst in morning. Use bedpan and release very slowly while spraying gently with peribottle. Breathe in with burn. Then breathe out. Slow, slow. Walked to bathroom later and did soaks. Walked again. Urine sample contaminated, but I might not actually have a UTI. Everyone with this treatment burns!! Working out process with Michael. Home tomorrow.

22-Jul-18
Home. Took two showers. Comfort punctuated by some shooting daggers into my bottom. Drank chicken broth and orange juice. Had shakes at night and hope it’s not my cell count tanking. Taking two antibiotics: Levoflacin (Levoquin) and Nyastatin. Swollen feet. Hope that’s only from the hot shower.

23-Jul-18
On Advil 4 times a day, Oxy as needed. Last day for Levoquin. Still swish with nasty Nyastin. Had yogurt and apple butter for breakfast. Chicken broth and jello for lunch and dinner. Nice nap that helped with pain. Oxy and Zofran at midnight

24-Jul-18
Movement at around 7:00 AM, partly in shower. Yuck. Very very sore. Two naps. One in morning and one in afternoon. Mouth sore a little worse. Doc says to soak until skin is dry and then I can use Aquaphor again. (My daughter's 49th birthday.)

25-Jul-18
Very sore anus and burning urine. Depressed today. Feel this will never end. Lymphedema means I’ll have piggy feet forever, which may not be that long. Rain also lasting forever. Had chicken soup with stuff in it, not just broth, and tasted ok. Mouth sore on tongue still bad. 

26-Jul-18
Had weird and awful response to Nystatin. Swallowed wrong way and burned my throat.  Stayed creepily irritated all day. One nice well formed poop. Mouth sore diminishing, but sore throat with Nystatin weirdness remains. Gargling with salt.  Was able to down chicken soup with stuff in it again. Low platelet count. Off to Albany tomorrow for blood transfusion. 

27-Jul-18
Horrible sore throat. Managed to get Advil down and started hitting the throat with ice. Went to hospital for transfusion. Nurse identified abscess. I sneaked in 2 Aleve.  Was able to eat soup and abscess exploded. Seems to be gone.

28-Jul-18
Sore throat gone. Lots of puss. Bowel movement painful. Advil and soak.

29-Jul-18
Got up in early AM. Bowel movements hurt and bleeding. Took Advil, went outside for walk to garden and compost pile. Drank OJ and threw it up. Lots of mucous and bad taste. Hope this means I’m cleaning chemo out of my system. Had a little lemon ice cream. Good. Also good response to spinach and ketchup on hot dog roll, although not hot dog itself. (My youngest grandson's 13th birthday.)

30-Jul-18
Trying to avoid bowel movements and heal skin. Showers and soaks. Advice to other Chemo takers: best supplement drink is Bolthouse Farms chocolate Protein Plus.  Ensure should be buried in lead lined tanks so it can't leach into the earth. 

31-Jul-18
Upped Oxy to 2 pills.  Pain got to me. (My older son's 50th birthday.)

1-Aug-18
Two Oxy pills 3 times a day. Senokot at night for constipation. Cooked but little appetite. Down 15 pounds.

2-Aug-18
Stopped taking Oxy. Took 2 Advil but saw streaky red marks on leg suggesting low platelets. So stopped that and baby aspirin.

3-Aug-18
Still no Oxy. Don’t miss it. Skin healing.

4-Aug-18
Intestinal distress and nausea. Threw up everything in the PM. Series of little poops. Skin healing.

5-Aug-18

Just taking Advil.  Side effects receding.

End of notes. No more vomiting or mouth sores and the start of recovery and healing. Last week, seven months later, I started pembrolizumab, an immunotherapy that I hope will halt or slow down my cancer's metastatic journey. The side effects shouldn't be as tough this time.  

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.