Memorial Service Details / Obituary (or Framework)

Memorial Service 

3:00 pm on Sunday, April 26, 2015
Reception to follow
Evergreen Museum & Library
Specific location:  Carriage House
4545 N. Charles St.,  Baltimore, MD  21210
Located just north of Loyola University campus on North Charles St.
(For information on the mansion house and grounds, please visit www.museums.jhu.edu)

Obituary/Framework

Elizabeth Bliss Randolph was born on January 18, 1965 in Cleveland, Ohio, to Andrew B. Randolph and Deborah B. Randolph. Her family moved a few times in her early childhood, eventually settling in Minneapolis, Minnesota in 1974.  She attended The Blake School for middle school and ninth grade. She petitioned her parents to attend boarding school for the remaining three years of high school. She won and went to Phillips Exeter Academy in New Hampshire. She always considered this one of the best decisions she ever made. She thrived at Exeter  - the academic challenge, the dialogue, the exposure, the secret parties and the life long friends she made. She wrote an essay in her senior year titled, "E. Bliss and Me", which can be found under Title Track, in the reference section on this blog.

After Exeter, she went off to a humanities honors program at Stanford University, her father's alma mater. It was another good choice, allowing her to embrace the west coast, and all ways it differs from other places.  Majoring in English, and loving poetry, she found time to play ultimate frisbee, attend many Dead shows and other concerts,  study in Paris for a year, enjoy communal living at Phi Psi, protest the expansion of nuclear arms and expand her circle of life long friends.  

After graduation in 1987, it was off to an apartment in San Francisco. This was a time when a humanities major could find a roommate and live in that special city.  She landed a sales job for a small publishing company. Her territory included the Pacific northwest and east to Colorado. This afforded opportunities to hone her downhill ski skills, back country hiking,  see even more live music, continue her personal writing projects and make yet more friends.

On a  Sunday morning in 1991, in a sunny apartment in Noe Valley, Elizabeth decided to accept a promotion to become an editor at Williams and Wilkens, which is now part of the Wolters Kluwer publishing congolmerate. This is what brought her to Baltimore, Maryland. She worked for a wonderful mentor, and professionally it was a very good move.  Her first year in Baltimore was hard, as it often is in any new place.

Elizabeth threw herself into her new city.  She was an early member of the Fed Hill Tuesday Night Dinner Group, took mandolin and aikido lessons and found an ultimate club, the Baltimore Banshees.  Elizabeth and I were team mates, which is how we met in 1993.  We started dating in the spring of 1994.  The beginning of joint friendships

By 1996 she  started imagining new professional possibilities, which meant  creating an opportunity to head back to school for a Master's degree. Seeing how much she LOVED learning, I cannot believe she ever left the academic environment in the first place. The Publication Design program at the University of Baltimore provided a nice balance of writing and design, focusing on the then still  newish "world wide web."

Her new degree in hand and a wish to change professions,  created a nice jumping off spot for a 9 month "walk about."   With the support of our friends, at home and abroad, we left in September 1997 for a backpacking adventure through New Zealand, Australia, Asia,  and Europe.  

We were lucky to return when the US economy was booming.  Elizabeth was hired by a local start-up, GR8, as a Information Architect.  She was one of the first anywhere in this new field of web user experience and design.  She gathered enough experience and contacts that when GR8 became a casualty of the dot com bust in early 2000, she had options. She did some consulting work and quickly realized there were plenty of organizations that could use her assistance.  She founded BetterExperience.com out of an office in Woodberry.  She was so busy with clients she didn't even put up her own website until 2007.

During this period, a few other important events occurred.  We moved to Alonsoville.  I'm not sure we would be in Baltimore today, if it wasn't for our uniquely wonderful neighborhood, especially our immediate neighbors.  Lyla Bliss was born on August 25, 2002 and Finn Hogan was born January 5, 2005.  Elizabeth also became a regular attender  at Stony Run Quaker Meeting during this time.  Somehow she also found time to complete the Baltimore City Community Mediation training and provide service as  volunteer mediator.  Each Monday night during all these summers she was off  to play ultimate in the co-ed Monday night league in Catonsville.  

In January 2012, she accepted a position as an Information Architect with M&T Bank.  She was looking forward to working with a team to see a web redesign through to completion.  As a consultant her work was focused on the front-end of the project and generally she was on other projects when the site finally launched.  

We finally got around to getting legally married on January 18, 2014. 

I miss her.

Most of you who know Elizabeth, know of her deep love for the Adirondack Mountains, especially the high peaks area.  She spent time almost every summer since she was 3 in those mountains and on the lakes.  In childhood, she was there for several weeks.  Her blog post from last August speaks of this deep connection.   Her remains will eventually rest in a small cemetery in Keene, NY.   Her spirit is already in those mountains and now, in all of us.

By Louisa A. Peartree

Nurse Log

April 15, 2015

My friend, Becky Foster, wrote me  that my cancer is like a rotting log in the forest of my body, but wonderful things happen in the ecosystem of a rotting log: mosses, mushrooms, lichen, flowers and even fungi that harden into little canvasses, the ones we use to document Adirondack hikes. These logs are known as "nurse logs" because they nurture  along so many growing things.

Becky wrote, "If  anyone could turn this rotting log into a miraculous corner of the forest, you can! I think of you now as a force for generating the most lovely and most green things in the forest.  You've actually been doing that all along, now that I think of it, but now your power is increasing."

Well, I don't know about that power. Maybe. I hope so.  Now I am recycling so much love coming in to me. And I must admit that this cancerous rotting log in me - while it saps my energy and strength - has certainly engendered loads of loving kindnesses that have bouyed me along this journey.  There are many beautiful growths sprouting from this nurse log. You can hardly see the log.

I always encouraged Finn to "focus and finish" his homework.  As I focus and finish my time here, my nurse log brings me the comfort and joy of all of you,  green and growing.  I am part of the circle of life and I am with you.

Mobility

Mobility is the key physical factor in my health right now. Immobility is my greatest fear and anxiety point. I try not to feed this fear, but that is hard. The signs press on me:  the mental delay between thought and action, loss of muscle mass and weakening of the feet, light headiness etc.  Meanwhile, an incredible amount of care giving from all quarters is flooding in.  I am turning to that. 

So, even as my body is weakening, my spirit is actually starting to soar.  This is part of the wonder, part of what is

being revealed.  Thank you everyone for the soaring.  

The Meadow

Medical Oncologist Reconsidered as a Bush Pilot

My doctor is the very model of a medical oncologist, in a city, in a highly industrialized country. She has trained at top universities; works at the best hospital; has access to the latest data, techniques and treatments; and conducts and publishes her own cancer research. She is the medical equivalent of an elite jet fighter pilot. 

Staying with the metaphor, clinically her job is to help wounded planes fly the furthest and best they can, considering the damage sustained by cancer. In a few cases the planes fly normally on their own again. She does all this using sophisticated diagnostics, specialized drones, fluids, and other treatment repair tools. 

When I became her "patient plane" last May she was faced with an aircraft that flew well but had serious internal damage. After trying two different techniques that did not succeed in making any repairs, we had a conversation about the next options. 

Finally I asked if she could please just help fly me home. So she agreed.  Armed with her own escape method to get her back to the jet fighter, she finds herself sitting in what amounts to a sturdy, early-model bush plane. All the controls are analog, no electronic systems per se. Some of the controls simply don't work, some labels are worn off, or nonexistent, or in some antiquated foreign script. But it is a machine with soul.  

So that is how my doctor became the very model of a tough, canny bush pilot in a remote land. She has to rely on her fundamental knowledge of flying -- wind, direction, altitude, a sense of orientation, basic physics -- and the naked eye. She is keeping her eye out for a meadow. 

The Meadow

We are looking for that meadow --
How will we know it?

It's...golden. Have you been here before? 

The light on it it glows

but does not throw a glare.

It smells…well, it smells of earth. 

Or like your forearm as you walk outside 
on a warm day, just starting to perspire. 

It smells good.

The ground is solid,

neither dusty nor bumpy nor muddy.

It's big enough to land a small plane in.

And small enough to recognize you.

Call you by name.

Call you home. 

-Elizabeth B. Randolph               

When?

Previously I  have alluded to the rollercoaster this whole cancer journey puts you on, including "glints of anger." One of these glints takes the form of what I call my "punk rock song." It's a short, throaty howl of rage, lashing out at the biggest unknown: when is "it" going to happen?

You have to supply your own imaginary soundtrack of wailing guitars, smashing drums, and crazy snarling vocals:

When?

When??!!
I don't know when.
I can't tell you when!
No one can tell you when!!
I CAN'T F#@KING TELL YOU WHEN!!!!!!!

And I don't
want
to
know

Photo of British punk band The Sinyx, found on http://www.southendpunk.com

Twinkle Passage

In the late fall I started visibly noticing how much muscle mass I had lost. This was not surprising given the fact I'd basically stopped exercising. But besides my legs being smaller and me fitting into all my skinny pants (a girl's dream, right?), it was the arms that got me. I lay down in my bed at night and held up my arm, only to see the skin on my forearms and upper arms sag with wrinkly, grandmothery skin. For some reason this really bothered me. I would have to do something, maybe arm weights. 

One night before bed I was semi-reclined, and tried to swallow an Advil pill in this position. It went down the wrong pipe and I almost choked, setting off a vigorous coughing fit. This set off a chain reaction in my mind. I saw the many steps of physical decline that lay ahead of me, and wept. "I'm not going to like this," I said aloud to myself after a few minutes. "I'm not going to ike this one bit." 

Gogo appeared, sitting at the edge of my bed, and patted my feet. (Gogo is the me-30-years-hence alter ego I introduced in my very first blog post). She sat quietly, not needing to say anything. I stopped crying, and sniffled. I knew she was right. Don't worry about it. "And I suppose you'd say don't worry about the arm skin." Gogo smiled, and shook her head. "Don't worry about the skin." She tapped her finger to her temple, pointing to her eye. "Worry about the twinkle." I knew what she meant. Focus on that sense of aliveness, of being, perceivable in the twinkle of an eye.

Often I have experienced disease and healing through images and imagery -- whether in dreams at night, or semi-lucid states (yoga nidra sessions, for example), or just daydreaming.  One image in particular has helped me through some tough times, and I'll try to conjure it: 

The Passage

What it is, is a hole,
an opening,
a tear in the fabric of the planetarium,
a flap in the actual sky.

I have seen light from it.
I have held onto it
with my fingertips,
and dangled there.
What I don't know is,

where does it lead?

I imagine squeezing between table and chair
in a crowded restaurant.
Or threading a needle,
outside, in the cold.
Or holding onto a rope that pulls me
from the water to the deck of a boat.

A passage to…
Survival. Arrival.
Even now, even now!
I don't know for absolute certain.
But I keep an eye on it.

-Elizabeth B. Randolph

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"