Waiting for Metastasis; A Five-Day Diary

December 16, 2018

Lit up for the Christmas Party,

Neck strung with colored flashing bumps,

Small and flashy, face shivering with wrinkles

but maybe not that old, just skin leaden with travel,

Elaine has been everywhere:

Writing small plays promoting condoms in Burma and Uganda and Ethiopia;

Sailing and cooking on the Mediterranean;

Living in Venice;

And now, with a three-month rental in New York,

learning to paint geometrically constructed nudes.

"I don't like landscapes." 

The night before, she told me, her hosts were out and she went onto the deck into ice-driven blunt December. 

The door behind her whispered "lock".  

Windows pressed shut, neighbors as far as buoys in a wind-wracked sea, no way in.

But the extra car was open.

For 50 minutes till her friends came home, she sat inside, humming yoga breath,  

In out in out in out. 

"I was very Zen." 

Then, vibrating to the party, she glitters away on tick ticking feet, a gyre whirling in place until the center fails to hold.

December 17, 2018

Old Killick,

Fur plating his back with stegosaurus shards, can't clean, can't eat,

All bones flattened on a chair.

He must be dying. 

I empathize. Neither of us are telling time anything right now. 

I pet him.  Sad, sad, all things pass.

Then off to the vet and out comes his bad tooth.

By midday he is off his chair, eating again, and complaining if dinner is late.

Betrayed, I'm the only one dying now.

December 18, 2018

A fellow volunteer, 86 years old, a cane beneath one hand, props Xmas clichés -- plastic holly, ivy, wreathes-- in neon clusters at the tables' ends, 

Certain to cheer the gray and mottled diners later on. 

In the kitchen, where I'm cooking, we hug, then back tap our way apart.

"I fell in the bathroom last week." A growly voice with a smoker's burr. "On the floor for twenty hours.  First on my back, then I pulled my way to the wall and sat for the rest of time. I could hear the phone ring."

"Who found you."

"My son in law, thank god."

We talk of our mutual joint pain, worthless analgesics, Internet cures untried, Christmas. 

"What are you going to do?"

"See my kids and visit my sister."

As she leaves, she gives me a kiss that smells of mother's powder.  

It never happened before. So she knows too.

December 19

My friend's brother has multiple dystrophy.  His beautiful, far younger, wife-- "I want someone to grow old with--" has taken up with two millionaires and wants to go to Africa with one, along with their two girls.  

He believes she'll blacken both her eyes and pretend abuse so she can grab them.  He is shattered and dying.

Mid-forties is the crazy girl time before invisibility, sexual Godzillas stomping on children and men. Been there. 

My former husband after my diagnosis, sent me books to read.  

My last husband is here. How did I get so lucky?

December 20

Metastastis confirmed. Ten years gone, my friend, sitting in a Tuscany sun, slides beneath my search for trials, saving my screen but not herself. Her death was an exhale and her hand on mine, a release. Soon, when sitting against a wall or in a car or boney on a chair, I will be breathing in and breathing out, breathing in and breathing out. 

Wolves and Bells at the End of Treatment

The final phase of my cancer treatments, I was told, was the toughest part of the process, since I'd be clobbered for several weeks after they were completed by the cumulative effects of two chemo weeks (mouth sores, nausea, creepy smell and taste sensations, exhaustion) and 30 days of radiation on the whole pelvic area (second degree burns, burning urination, bowel craziness, more exhaustion). On July 18^th, with two radiation hits left, I tottered into the cancer center dehydrated, shaking, with white and red blood cells tanking, and in considerable pain. My radiology oncologist kicked me into the hospital, where I was gratefully incarcerated for the next five days, cared for by Michael and teams of angel nurses. 

On the first night, however, I had a strange visit.  My younger sister Ginny, who is a nun, appeared at my bedside in full habit. (This was peculiar since her convent is in Maryland and I wasn't expecting a visit.) She quietly explained that I had been recruited for a clinical trial. "You're going to be sent to a secret location in the woods and assigned to one of three teams.  Team three has fairly healthy patients, team two less so, and team one is made up of totally disabled people."  She went on dispassionately to describe the study methods: "Wolves come out of the woods and attack team three first and tear them apart.  The survivors then run to team two, who are then also attacked by the wolves.  Those survivors then join team one, and the wolves follow to rip everyone up."  I was slightly puzzled about what outcomes were being measured, but Ginny left before letting me know what they were or what team I had been assigned to.  

Somewhat later, in the middle of the night, a siren went off and a loudspeaker bellowed, "Team three, report to Level 5.  Team three, report to Level 5."  Still not knowing what team I was on, I tried to get out of the bed, but was unable to move. "I guess I’m on team 1," I thought. 

A nurse then came into the room, looking competent and normal, and I asked her where I was.  "St. Peter's Hospital," she said.  

I turned my head and looked out the window. It was daylight and the view was not a dense forest full of beasts but the neighboring medical building: homely, solid, and comforting. "Oh."  I turned to her.  "I think I was hallucinating."  

I described the wolf attack, and she wrote on my chart. "NO MORPHINE!  ALLERGIC!!!" 

At no point during the hallucination was I frightened—more like catatonic.  In the days following, however, the experience peeled back my mental kingdom where I am the ruling control freak and revealed a bleak wilderness, in which vicious beasts, unrelenting and unbeatable, inflicted suffering and death. I was thrown into an emotional darkness and, while depression is almost universal among cancer patients, I had not anticipated this intense hopelessness. 

After my diagnosis, I had the arrogant intention of transforming the whole cancer process, including any pain and the prospect of death, into a spiritual journey fueled by decades of random Buddhism-made-easy books, various yoga and meditation teachers, a few lectures by popular on-line gurus, and a lot of inspiring science fiction. But I hadn't counted on the wolves. My Catholic sister Sister had described a horrific vision and then walked away, taking her faith with her. No nice meditative respite, no tunnel of light, no pleasant Jesus or Buddha mitigated the desolation I experienced from this morphine-induced grim "study". 

Fortunately, as the treatment effects receded so did the bleak despair, and slowly the warmth from my wonderful husband, family, and friends and a vivid appreciation of ordinary moments shooed the wolves back into their lairs. (Full confession, many shallow pleasures—watching favorite comedies from the 80s and 90s, playing video adventure games with my younger son, and keeping up with Marvel series—were also excellent guards against the encroaching beasts.)

There's a custom among many cancer centers around the country to ring a bell when a cancer patient finishes treatments. Sometimes they read a poem placed near the bell. Everyone applauds and congratulates the lucky cancer parolee. This practice has its fans and also its opponents, typically those with metastatic disease who sit in the chemo unit while the bells ring, knowing they will most likely never experience the end of their treatments.  

Bell ringing also reminds me of George Bush's banner "Mission Accomplished" after bombarding Iraq, which was then succeeded by years of war, still ongoing. Cancer treatments are the gauntlet through which we trudge as part of our path through the dark woods.  When they end, we are not necessarily out of reach of the beasts.  Celebrating a single milestone trivializes cancer's emotional and physical outreach, which, whether it's metastatic or not, often exists for many patients as a continuous underground river of anxiety for the rest of their lives. 

I'm most grateful that St. Peter's, my cancer center, did not ring a bell when I had my last radiation hit.  I got hugs from my wonderful nurses and I hobbled home to face the next six weeks of nasty healing.  My scan in October will reveal whether tumors still lurk in the corners of my pelvis or, worse, have slipped their leash and gone hunting through my body's wilderness.  But at this moment, I welcome each autumn day and remain in awe of the kindness of my family, friends, the hospital staff, and many random strangers. The bells should toll for them.   

Half Baked

My anal cancer treatments passed the half mark this weekend.  All cancers are difference and so are treatment effects.  Here are mine during the first three weeks. 

Week 1. The first week's main event saw few unpleasant side effects other than The Bag (see link to the $48,000 chair). 

Week 2. During the second week the chemo effects washed up like detritus from an oil spill and provided continuous indignity and weirdness.  Some examples:

•         I was a bit random with my anti-nausea meds the first week, and on the way to Albany for my daily radiation -- a speedy 45 minutes up the highway with few exits -- I realized I was about to vomit with a great degree of violence.  Making not the wisest choice, I opened the window and let loose without considering the physics of speed and wind direction.  Back it came inside, stopping first at my face.  Lesson learned: take the meds regularly and keep a plastic bag in the car.  
  
•         Our car suffered a flat so we borrowed a friend's truck for one day's ride to Albany. Our friend is obsessively neat about his things, and Michael hates borrowing stuff from him out of anxiety that something bad will happen to it.  Although the drive itself was uneventful, about half way up my hair took the opportunity to fall out, first onto me, then onto our friend's lovely leather seat.  Desperate, I pulled hunks out and clutched them like an Adam's Family bouquet until we got off the Thruway and could stop. This time I was able to open the window and hurl my bodily traces out without a comeback.
•          Food tastes like ethnic meals in a country you never want to visit again.  Something happens to your taste buds so that anything you eat is transformed into peculiar unfamiliar chemicals with a mothball undertone and repellent mushy textures. I can't figure out if I'm actually tasting what food is really like, if the chemo is mixing it all up, or "It's People!"  Here's what I can stand eating: Greek yogurt, cooked fruit, and hot dogs. In that order.    The second week saw an explosion in mouth sores.  They did not enhance the taste of the food. I have not lost one pound.
•         I will not bother to describe the other intestinal indignities, which would only amuse small children.  

Week 3.  On the third week, the chemo effects settled down, and the radiation effect – The Hard Man -- hasn't kicked in much yet, except for a couple of ulcerated areas that apparently have healed up.    Naps are lovely.  I collapse around two or three and sleep like a baby.  At night I wake up around four, but. then, even without cancer I always wake about around four.  Same-o Same-o.

Summary

Perhaps the most disturbing aspect to the whole process so far is the metamorphosis of Self into some unfamiliar, unpleasant animal.  Ones impulse is to hide in a cave and let those lovely naps take over.  Aside from death fear, I think a lot of the depression comes from this perception.  So, during my early AM wake-up, I get up and meditate, letting all the strange body sensations and the churlish thoughts drift off until I'm back where I belong, the deep heart that came with me at birth and will be my companion to the end.  It makes me happy.   

  

The $48,000 Chemo Chair

"I love this chair!" The man in the neighboring chemo pen was talking to the nurse. "Supports my back.  Never gets sore.  I could sit here forever! I looked it up on Google.  It costs $48,000.  You better keep an eye on it.  I may take it on my last day."

Not exactly like the one I had but close enough. 

My own chair had cheap looking upholstery--plastic with shiny metallic threads--and was as rigid as stone, which I tried to soften up with a couple of pillows.  The hard composite arms were too narrow to rest an elbow on, and only one knob that tipped the back was available for any adjustment. In other words, I was sitting in an airline seat, only a little wider. The curtain was drawn between my neighbor and me so I couldn't see his extraordinary chair.  I very briefly nurtured a scheme of coming in early and nabbing it before this guy did and then remembered that my own stay in the chemo playground would only occur on two days – this one, my first treatment day, and one more five weeks later.

Two months ago, after many weeks of annoying symptoms that I assumed were from my hemorrhoids, I finally decided to see a surgeon to get rid of them.  After the examination, he said.  "You don't have hemorrhoids.  You have anal cancer."  That's when the brain stopped peacefully yattering. It became a nothing. A blank. He followed quickly with, "The treatment is tough, but it's very curable." The mind edged up again, and continued processing.

Anal cancer.  WTF.  Regardless of its position, it isn't the same as its colon and rectal cancer neighbors. It's pretty rare and occurs mostly in people with HIV and women over 60 (that would be me), with most cases caused by the human papillomavirus, or HPV (also me). The virus is mostly famous for causing cervical cancer, but it also triggers my very own anal and many oral cancers. (Parents of teeners – get your kids vaccinated!) HPV is usually sexually transmitted, and I had, indeed, been a lively young woman, but now I'm 75 with decades of virtue behind me. Obviously the HPV had been skulking about until my aging immune system wore down so it could leap through to bill me for the wages of my sin.

Well, this might be it, but although leaving three quarters of a century of life is not tragic or even particularly scary, the urge to continue is stupidly stubborn.  So with a certain amount of liberal guilt, I am adding to the costs of our exorbitantly expensive health care system and throwing my body into its slurry of chemical and technologic treatments.

Now, before the 1970s people with anal cancer were surgically mauled and then usually died miserably.  Then Norman Nigro, whom no one has heard of but who deserves some minor variant of Nobel prize, developed a treatment protocol that avoided surgery and cured most patients.  And the Nigro protocol, is it's called, is still used: 60 Gy of radiation every weekday over a five week period, with continuous administration of the chemotherapies fluorouracil (5-FU) for the first and last 5 days and mitomycin, which is administered on the first day of each chemotherapy treatment. According to my radiologist, the tumors "just melt."

So I'm on day 5. I've had five rounds of radiation that haven't done anything special yet.  But, every week day over the next six weeks, Michael will drive me for the hour commute between Hudson and Albany to receive a ten minute radiation zap. Over time, the radiation will accumulate, and with 2 degree burns to the nether region, become nasty. Take it as it comes.

The chemo side effects supposedly aren't as bad.  On Monday, the nurse administered the mytomycin (which is purple) into my chemo port through an enormous syringe.  (The port had been surgically placed last week during a pain-free procedure--thank you Fentanyl-- when, fully alert and from under a sheet covering me from head to toe, I passionately argued with the team in support of the first Blade Runner movie and for a nuanced approach to the #metoo movement.) After the mytomycin, another nurse used the port to umbilically tether me day and night to a 10-pound case filled with a container of 5-FU and a large battery. I lug it around as a shoulder bag during the day and put it next to me in bed at night. Every few minutes it whirs like a rewound tape while pumping its poison into my veins, which at night feels like I'm cuddling up to a dysfunctional Sony Walkman, circa 1979. To keep clean, I can only sponge – no bath or shower. Today, the visiting nurse will come to our house and take it away, giving me a three-week reprieve until she comes again to hook me up for its final five days.

 I'll only have to go to the chemo room once more for the mitomycin plunger, during which I will sit for the second and final time in an airline seat – even if my neighbor's has become available.  This is because, as he left on my first day and passed my station, I commented on his good fortune.  "I really envy you. Your chair sounded fabulous." He frowned and looked puzzled, "But you have the same one."  

Note: I Googled chemo chairs and found the article he probably had referred to, which did say that our chair cost $48.000, but it was for 13 of them.  So each one was around $3700.  After digging further, I couldn't find any similar chemo chair that cost more than $3000, and most were on sale for half price.