Late Stage

I just want you to know I do not think of myself as a "dying person." You may call it dying, but I call it living -- until I am not. I am an accepting person. Today, I'm alive. Tomorrow, who's to say? I accept that. I accept the unknowing. 

Yes, it's unfair that I have a stage IV cancer and am not yet 50. Yes, there are sighs of sadness (cf., Joni Mitchell, "River"), contractions of grief, glints of anger. But my life has been rich in experience, not to mention protected from war, violence, famine, natural disaster, preventable disease. I have love, children, family, friends, community, freedom, security. All in a general context of blessings. 

I try hard every day to accept things as they are. Sometimes I'm extra tired, or have to acknowledge another limit, or trip over the fact that this is actually happening. Yet, as my daughter floated across the stage as a party child ballerina in the Nutracker, I was able to enjoy it with pure delight. I smiled when my son proudly helped make the sets and played Rudolph in the neighborhood play. Hardly a drop of maudlin then, or during the other rituals of Christmas. Best of all, my muse seems to be coming out of hibernation, or at least poking her head out. One night recently as I was lying awake, a practically whole poem came into my head, like a moonlit pearl. I'll share it with you now:

Late Stage
It's as if, each morning
the makeup artist comes
to render me a little
older, tireder, sicker
a line, a shadow, a waxy contour
in a cool palette
of bruise and moon

"What scene is this?
Where is the script?
What role do I have?
And how -- how should I
play it?
Someone! Whisper the cues…"

I may remove this mask
I may push against the pallor
with a steaming hot cloth,
or a walk in the brisk air
but it settles once again.
It's as if, each morning…

Rehearse, rehearse
one more rotation
around the axis
one more clatter of blades
around the frozen pond.
Day with its peopled rhythms,
night with its endless pockets
and muffled train song

Three sharp knocks
on the dressing room door
I rise from the chair at the mirror.
Tongue over teeth,
breathe in -- breathe out
I go on

-Elizabeth B. Randolph

So, do what you must for your own journey but please, do not despair over mine. Do not fuss over my itinerary or my seating arrangments. Just be with me, wherever I am. 

Let's Make a Book

My current personal projects involve gathering stories, recordings, and photos for my kids. To this end, I would ask anyone who has known me, from childhood on, to help me make a book of stories for Lyla and Finn to have.  Stories are easy to visualize, talk about, and remember. Here is what to do: 

Write a letter to Lyla and Finn, who will read it at some later time. It can be any size paper, up to 8 1/2 by 11. Please tell them how you met me/know me, and share a typical or memorable situation we were in, specific experiences we had together from specific times and places, and/or one or more telling anecdotes. Close with your name and your contact information. The most important thing though, is to write and send the letter (or email, or audio CD) at your earliest convenience. Like right now. 

Please send ℅ Louisa Peartree. Get in touch if you need our mailing or email address.

P.S. For background/context if you need it: I am off the clinical trial and have made the difficult but liberating decision to forego further systemic (cancer) treatments. We are just managing symptoms and reversible things. Hence the focus on spending quality time with family, enjoying life to the fullest extent possible now, and as Mason Jennings says, "...let the future come/ Into each moment, like a rising sun." 

Why are you stingy with yourselves?

"Why are you stingy with yourselves? Why are you holding back? What are you saving for—for another time? There are no other times. There is only now. Right now.”

-George Balanchine

Found inspiration the other day while picking up my daughter from ballet class at TWIGS. A page in a magazine had been tacked up on the bulletin board outside her dance studio, with this quote and photo. "Yes," I nodded. "Exactly!"

Do Be Do Be Do. Be.

This is pretty right on. Though on some days even this to-do list is a little much. Right now, I'm struggling with the fatigue caused by the clinical trial drug pembrolizumab, which I get every 3 weeks. To be precise, I'm struggling with what the fatigue demands: Do Less. 

Initially, since the new treatment didn't feel yucky-bad like the summer chemo, I assumed I could be as active and do as much as I felt like. Also, I had just enjoyed an uptick in energy during the few weeks between chemo and the clinical trial, during which I was realtively toxin-free. So when I started getting tired in the afternoon, I really resisted. I was secretly scared of falling lower on the dreaded performance status scale. Took a while to realize it was the medicine, and my body working hard, and that it was pretty common, and that I should just take a nap. So that is how carpe diem became carpe nap.   

The new routine became: active in the morning, rest in the afternoon before the kids get home from school. What I still didn't realize was that an activity or two that is particularly vigorous (say, moderate exercise, or even vacuuming), or something that calls for active engagement, focus, and/or concentration (a real conversation, going out to lunch, being at a party), means that later I feel that much more wiped out than usual. Need a longer nap, or have to take it easier the next day. And occasionally a day is just "lost" -- rest, or at least extreme slowness, is needed practically all day. Oy. This low-grade living is not what I had in mind as my lifestyle for the next two years or however many months. 

Well, too bad. It is as if the cancer (or something) is saying, "Apparently you did not hear, or understand. I said SLOW the HECK DOWN. NOW! We're not talking 3rd gear here, or even 2nd gear. Try first gear, with occasional cruising in neutral." New challenge: live at T'ai Chi speed, and live well, mindfully and gracefully. Listen for the still small voice of the true self. 

As I explained to my daughter at the beginning of the summer, "My full-time job right now is healing. That is why I'm taking time off from work and I'll be home." It's my job. The requirements are not like any requirements I've had before. Throw aside the usual measures, the usual "busy"-ness and tickboxes, ideas about productivity and performance, self-worth related to accomplishments, and hardest of all: attachment to results. This is the Buddhist part coming in. As Treya Wilber described in her husband Ken Wilber's book, Grace and Grit, it's about a balance between doing and being. For me this means, redefine the "doing" part, and amplify the "being" part. And while I'm at it, be kind to myself. Like Treya, my goal is to bring to bear the right balance of energy and effort -- without attachment to results. You try it! That's a lot of unlearning/letting go. 

What is a Miracle?

I've been wondering a lot lately about miracles, and the word "miracle." Are there no miracles to be found, are they everywhere you look, or something in between? What is a miracle? On one level, a miracle is something (good) that was not "supposed" to happen. An exception, an aberration, a variation, an improbability. Something unexpected, unexplainable, perhaps even unknowable by 'reductive' science. 

Then again, when I say or think "miracle" I can't help but conjure Walt Whitman, and his poem 'Miracles', which Louisa and I have always treasured, and which begins, "Why, who makes much of a miracle? As to me I know of nothing else but miracles…"

And what about the "miracle of life itself" (in the infectiously enthusiastic spirit of Annie Dillard, or Lewis Thomas in The Lives of a Cell: Notes of a Biology Watcher)? Consider the human body and all the intricate, interconnected workings of homeostasis. Every moment there are millions of cells and proteins and neurons and enzymes doing an untold number of jobs, simply so I may be alive and self-regulated. It's as amazing as the Earth, as the universe!

During the initial shock of my recurrence, I stepped onto an elevator and thought, "Maybe love can save me." (Little did I realize, intuitively I was onto something!). I got in the car to drive home and thought, "I need a miracle." And then, immediately, picturing my daughter, "But I..already got...my miracle (sob)." I'd had only a "2% chance" of conceiving and yet I did, and gave birth to a wonderful human being. Wow. Talk about a Puritan sensibility. "Only allowed one miracle! You've got yours, now move on, don't be selfish!" I had a long way to go to open up.

My friends Pat and Heather sent me a book -- one that I would not have picked out myself, even if it had been staring me in the face. It was From Stage IV to Center Stage by Denise DeSimone. A woman with stage IV throat cancer (squamous cell carcinoma no less) was given 3 months to live, and then wrote the book eight years later. I read the back, the blurbs. "OK, yeah. A 'miracle' story," I practically scoffed. Implying: "It's not going to help me, but it was a nice gesture of them to send the book so I'll read it." (I'm flat on my back from chemo so reading is something I can do). A lot of prayer is in this book. A lot of spirituality. And a lot of gumption too, which appeals to me. It got me to stop and think. This is a real person. The main takeaways: the importance of self-love, and forgiveness, and the revelatory stance of facing your cancer (or whatever challenge you face) not as an enemy to be fought but as a teacher to learn from. So I started going with that…
Later I read Bernie Siegel's Love, Medicine and Miracles (which I recommend whether you have a disease or not). In it, he presents "exceptional" patients, who by the power of love (and determination) outlive their prognoses, spontaneously resolve their cancers, or simply deal with unfinished business and gain true peace of mind, so they can die gracefully. They all 'healed their lives.' 
Bernie notes, "all healing is scientific, even if science can't yet explain how the unexpected "miracles" occur." People often mistake miracles for luck. But the healings Bernie describes "occur through hard work. They are not acts of God…They are not always measurable. They happen by means of an inner energy available to all of us."

Uh-oh. That "energy" word, for some, raises a brow. You may be skeptical, and fundamentally discount things that sound "New Age." But, people do defy odds. Some people are not "supposed" to be alive. People do find peace and reconciliation and grace. It's amazing how open-minded you can be when you really have to be.
At first, I simply took my cancer recurrence at face value, did some research, and found myself in an elaborate bird cage -- or prison, really -- of limitation, of the finite. I began to see everyone and everything through the bars of this prison, which caused me pain, yet I couldn't stop picking at it. I felt at once very far away and also very near -- to all the "last times." It took some very intent soul-searching and "inner work," and help from friends and the outpouring of love, until I got to a place where one day I happened to notice a messenger hummingbird. That started a shift. And then I realized something fundamental, something so obvious, about this prison. The door was not locked. It was not even closed!! So I just walked out.

Tip Top Refill / Hummingbird

I'm reeling and a bit starspun from events of the past few weeks. It's been a fair piece of road since the rather discouraging meeting with the doc on July 18.  The combination of special visits with friends and a week in our beloved Adirondacks showered us with love and certainly refilled many of my reservoirs of spirit and creativity. 

First, I took advantage of the suddenly-no-chemo week of July 21 by making a few tours of the Johns Hopkins stadium steps, to get my legs in shape. On the way home from one of these sessions, my walking settled into a meditative cadence and I thought:  

I go as a pilgrim --open to the path before me.
I go as a student --open to the teachings around me.
I go as a healer -- practicing tender mercy,
aware of the healing available within, full of the miracle of life itself.

What was slated as one week in the Adirondacks convalescing from a new round of chemo turned out to be 10 days of a willing suspension of disbelief. Louisa and I took a mini-roadtrip north, visiting Natalie and Peter in  Philadelphia, Susan and Mark in Easthampton, Liz Gardner in Greenfield, and Matt, Jenny, Becky and Sam in Williamstown, MA, where we reunited with our own kids. We then made the pilgrimmage to the Adirondack High Peaks, a place I've come "home" to since I was 3. Not only did I walk in the woods and make a very doable hike (Indian Head), I made it 8 miles up & down the 2nd highest mountain in New York (Algonquin) with 10 family members & friends! 
I rowed up two lakes to commune with the "peace of wild things" and "the presence of still water." I took healing plunges into a mountain lake and a rain-swollen river. Had a lovely woods walk with Emily whom I hadn't seen in 30 years. Had dinner with Nina and Esty, the best two 85-year olds on the planet! Took the ferry to Vermont to catch the art opening of our friend Alisa and have dinner with her and her husband Danny. Even played a little tennis and golf. And of course, spent time with my mom, brother-in-law Patrick, brother John and Anne & their girls & cousins, and my own intrepid "team ELLF" as my dad has affectionately nicknamed us. 

Back home, there was a laundry day and then more goodness. I received cards and gifts and felt touched, humbled and a bit overwhelmed. I met with my "Quaker Guides" and was much encouraged. My former coworker Maureen brought a delicious lunch and connected me with Jan Morrison who came to my house from an hour away to play the "healing harp." I lay down on our porch couch and soaked in Celtic harp for an hour! Then a wonderful 3-day visit with our dear friend from California Annamaria and her kids Rianna and Sovin. We went sightseeing in DC, boating in Annapolis with Chris & Milty, and then collaborated on a dinner party with Shirley, Joyce and Vicki. It was fun to entertain again.

So the prescription to "go enjoy your vacation, enjoy life, and come back in tip top condition" was right on. When we met again with the doc she had picked out a clinical trial and I am taking steps now to enroll in it. If all goes according to plan I'll be starting a new treatment toward the end of August. Yet again a new world is before me and I don't know exactly how it will be until I'm in it. But I'm ready as I can be.  

The finishing touch on all this presented iteself in our front yard yesterday morning. Annamaria and I were sitting on our little screen porch, savoring our last few minutes together before she continued her East Coast visiting and returned to California. A hummingbird came right up to the screen, hovered for a few moments above the azalea bushes, then sped off. This was rare. I've seen a hummingbird maybe once or twice near our house in the 14 years we've lived here. We remarked that is was a much more likely sighting in Annamaria's yard. The image and sensation stayed with me all day. Curious, I did a little research and found some not too surprising descriptions, several of which were similar to this one on spiritanimal.info: 

The hummingbird generally symbolizes joy and playfulness, as well as adaptability. Additional symbolic meanings are:

• Lightness of being, enjoyment of life
• Being more present
• Independence
• Lifting up negativity
• Bringing playfulness and joy in your life
• Swiftness, ability to respond quickly
• Resiliency, being able to travel great distances tirelessly

And further: 

When the hummingbird shows up in your life, it may be an invitation to flex your path, perhaps even bending backward or forward, in order to accommodate life’s circumstances. You may be required to adapt to a situation that is a bit more demanding than usual. The wisdom carried by this spirit animal emphasizes flexibility and lightness in your approach to the unexpected.

Hello, hummingbird. Okay! Thank you for giving me a "blinding glimpse of the obvious" and showing me how this boat has slowly but surely been turning itself around. This means hope. Hope is key to survival. Hope is the 'why.' Love is the 'how.'

Regrouping

Well after all that - after two months of arranging life to accommodate the chemo schedule, and getting lots of help with kids and care through two rounds, and dealing with side effects and losing the hair, and losing Louisa's dad Frank and having the funeral, and a whole lot of intention, prayer, light, positive juju etcetera - the scans showed no appreciable change in the tumor size, to our dismay. They haven't grown, which is good, and there aren't any new ones, which is also good. But they didn't shrink, and what we really wanted was shrinkage. That was the deal. But…there is no "deal." Not the way it works. This thing just happens to be pretty cagey. Take a breath. In, out. Keep doing that.

My doctor prescribed recovery time and getting into "tip top condition" before we regroup in a couple of weeks to see about clinical trial options. Immunotherapy is the most promising area of research. The whole approach is opposite of chemo: use drugs to enhance the body's immune response (and attack the cancer cells like they inherently should) versus use drugs to kill all fast-growing cells. 

This is a shifting of gears but something we knew was a possibility. I never said it was going to be a smooth ride now did I? Buckle up. Stay positive. Keep your eye on the horizon. 

On the way home from receiving the scan information I stopped at a red light. Homeless man approached. My windows were open anyway. "Hang on," I reached into my wallet to give him a few bills. "Now you take care of yourself!" I said. He didn't look good. He looked pained, but he was staring at my scarf. "Oh…" his brow furrowed. "Can I ask you a personal question? Do you have cancer?" "Yeah. It sucks," I replied, giving him a couple more bills. "What's your name, dear?" he asked. "Elizabeth." "I'm going to say a prayer for you." "OK," I smiled. We fist-bumped. The light turned green. 

Hair Today, Gone Tomorrow

It is scary for a woman to lose her hair suddenly and involuntarily. At first, it's just a concept, a side effect of chemo that you know will be upon you. "Pretty much Day 21" says one doctor. Words: lose your hair; bald. You try to prepare your family that you will look different, but be the same. You arrange for a wig to be made (in itself the most unusual grooming experience). You borrow lots of fun and pretty scarves and headcovers from friends (thank you Robin and Heather). Then one day you touch your hair and some of it comes out. Pull on it - more. You take a shower and a LOT of it comes out. You stare at the wastebasket of hair in disbelief. It's like a weird dream, like those dreams of your teeth falling out. 

Well, let's get on with it, I thought. Shave the head. Our local salon owner offered to come to the house. I gathered some friends with a plea: 

Shave and a haircut -- two bits
Appointment at my house -- at six
Be there if you wanna be
I'd like some love surrounding me
Tell me that I'm still ok
After my hair has gone away

So we made it a happy hour with drinks and appetizers. Luckily Matt the salon owner is a wise and gentle soul, and once he set out his tools asked me what I wanted to do here. He diplomatically offered a transitional solution: "We could just do a short pixie cut for now. I can come back. This is not a one-time offer!" I looked at Robin, hm maybe that is an idea; then at Louisa whose eyes said "Yes! Start with a short cut!" So we did. 

The transition pixie cut was a good solution and it lasted a week. Got everyone used to change. Then it was time, and I went up to Balance (the salon) after hours and got the shave, first accompanied by Louisa and then Kristin. Then Matt very kindly washed and massaged my scalp. And so the era of headcoverings out in the world, naked bald at home began.

Musical Healing

Round 1 Day 10

I had run out of gas and headed up to my room, pulled my 'day' sheet over me, and curled up into nap position. Mom brought up the mail and offered me Poetry magazine, The New Yorker, or a 6x9 white envelope with unmistakable handwriting and a return label from Penn Arts & Sciences. "I'll take that one!" I said and plucked out the envelope, squeezing it to feel a hard case. Hm!? Music from Natalie. Mom turned to pull the door. "Mom, before you go would you mind grabbing me that canvas bag by the bookcase? Thanks." 

I drew the "chemo bag" (a gift from Joanne) toward me and pulled out the CD player and headphones. Then I opened the envelope and the CD - Live from WXPN's The World Cafe with David Dye. I love the World Cafe. Always wanted to go. I took out Disc 1 and put it in the player. Then I read the note: "...tucked in liner notes is a CD of Dylan tunes performed by an amazing gospel choir..."  So I fished it out, "Dylan's Gospel" by the Brothers and Sisters. I switched up the CDs, imagining Dylan's gravelly voice singing, "But you're gonna have to serve somebody." I put a pillow behind my neck, and hit play.  Organ, piano, tambourine. Within 3 seconds of  the lead singing "The Times They Are A-Changing"  -- the tears started flowing out of me. Fast. I reached for the canvas bag again, knowing there would be - Yes! - tissues. Bless you Joanne. Then I wept. My shoulders shook. I was smiling, and crying.

Come gather ’round people
Wherever you roam
And admit that the waters
Around you have grown
And accept it that soon
You’ll be drenched to the bone
If your time to you is worth savin’
Then you better start swimmin’ or you’ll sink like a stone
For the times they are a-changin’

There was an underlay of Dylan and high school memories and my best friend Natalie, and the overlay of everything accumulated from the past 10 days of the first round of chemo, during which I had not cried. Everything now released. For a moment I hoped my mother wasn't watching me through the crack in the door. For a moment I saw myself in some Big Chill type of movie. Let everyone see. I kept up the tears right through "I Shall Be Released." I remembered yelling out the window of my room in Soule Hall sophomore year, into the spring air after final exams, these same words:

...I see my light come shining
From the west unto the east
Any day now, any day now
I shall be released!

And here I was. Seeing my light. Bawling my eyes out. Healing from music. I may as well call it a "self-authenticating religious experience" (to borrow a phrase from Frederick Buechner). My shaking subsided, my tears slowed down, and I listened to the rest of the entire CD in gratitude, flooded with a sense of love coming at me from everywhere all at once.

Thank you Natalie for this gift of music. Thank you Joanne for my "chemo bag" with just the right ingredients. Everyone: check it out. Great music.

See: The Brothers and Sisters - Dylan's Gospel

Naive

Most people, thankfully, are "chemo-naive" and will always be. Technically "chemo-naive" means you have not had chemotherapy. It's a clinical research term, for classifying subjects. You are chemo-naive, until you aren't.

But that first time, Round 1 Day 1, you still don't know how it's actually going to feel for you. Because "everyone is different" and may or may not experience some or all of the side effects. I called it Stepping Into The Void. You come home...not knowing. You sit, waiting for the other shoe to drop, waiting for the hammer blow. Cowering, basically. But I did write everything down, as was advised by a colleague who'd been through it before, so I'd at least know what to expect the next time. I even made a little data-table of side effects (I made a passing acquaintance with almost all the side effects), with Consumer Reports-like circles indicating severity. Overall, the best description I can come up with of what chemo feels like inside is "unbidden storm" -- some strange weather that presents itself in your bloodstream, clouding up ang giving a waterlogged feeling especially in your abdomen, chest, neck and throat.

I'm not naive anymore. My eyes are wide open. My friend Natalie passed along this etymology: "In Greek the word for poison and medicine is the same: pharmakon. Also related to sorcery and sacrifice. A heady stew of the most elemental human stuff and all working their magic." With the help of my Quaker Guides, and a book by Stephen Levine entitled Healing Into Life and Death, I practiced reframing my attitude towards the chemotherapy from "poison" to "healing medicine" which I openly invite into my body so it can be conveyed into the areas of need (See Meditation on Taking Medicine Within). I also have a nickname for my "port" (medical device inserted under my skin above my right breast, into which infusion needle is placed to deliver the medicine). I like to call it the portal. And, I worked with my friend Marilyn, who recorded a guided imagery meditation for me to listen to while getting the infusion (and any other time I want to listen to it). It incorporates images from my favorite places and associations, and carries me safely along while the medicine is coursing through my body.

The 4 Channels

If denial about an illness is like being in outer space -- silent, surreal, with the unfathomable beyond, and the gorgeous, glowing Earth still in sight -- then disclosure about said illness is like a rocket re-entering the atmosphere -- high velocity, noise, flames, then a parachute and a jarring yet successful water landing. While in the "re-entry" phase I clutched to an initial coping machine that consisted of four channels: Science, Grief, Exhaustion, and Game Face.

In Science there was to be found test results, conversations with doctors, medical articles, clinical trial descriptions, data, statistics, cycles, patient education material and a gradual realization I would not find that much specifically pertinent to my case, nor would I find much good news. But still the pull of the literature can be repeatedly seductive.

Grief was a technicolor mix of morbid indulgence, pity party, fantasy, tragedy, howling, sadness. Compulsively wallowed in but not for any length of time.

Exhaustion was a quiet, in-between no-man's land of a channel, white noise really, and rest.

And Game Face, well that one was on most of the time, it must be said. You get  up in the morning, get the kids to school, drive to work singing "Cabaret" in the best voice you can muster, answer emails, have lunch, talk to people, drive home singing Cabaret again, make dinner, talk to people, shepherd kids through homework/reading/toothbrushing/bed, do chores, and if you're lucky spend a few moments one on one with your wife.

Be Here Now

I have but one life to live, and I just found out it may be a little shorter than I'd planned. But then again, life is what happens when you're making other plans, right? It's too bad because I've recently befriended a woman, and now I don't know quite what to do about her. Her name is Gogo and she is 80 years old. She is short (shorter than me!), has a slight hunch to her back and a twinkle in her eye. Silver white hair. Never stops moving (hence the name). Small, spritely, quick like a bird - grandmother-on-the-go, concentrated energy. She doesn't sleep much at night, but takes a siesta religiously. Always curious. The truth is...Gogo is me in about 30 years. So. What to do with her? Well, I'm going to do what we do in our household. Invite her in! Set a place at the table. Include her in the party. Let her be here now. Because that's what we're doing, that's what I'm trying to do.

"...Be here now, no other place to be
All the doubts that linger, just set them free
And let good things happen, and let the future come
Into each moment, like a rising sun…"
--Mason Jennings ,"Be Here Now"

Listen: Mason Jennings - "Be Here Now"