The starting line for the next section of the journey

What is it – three and  half months, and here I am again, after a tired and awkward silence.  Home since early January, and I won’t go through the good, bad, and ugly except to say this: Reduction of tumor by over 10%, thanks to chemo and radiation – obviously quite good. A miserable case of herpes zoster (otherwise known as shingles) that just won’t quit me,  and various emotional sadnesses, depressions, happinesses, elations – I won’t say anything more than in other words, life as we know it. Welcome to samsara, my teacher Lobsang tells us.

A dear friend has gone through far worse and survived, so please pray for Grace’s ongoing successful recovery from open heart surgery.

This entry is a brief message, with more to come in days to come, now that I’m conscious again and running the marathon of a new round of chemotherapy.  The effort is a program of five days at a time each month, with a medical review on day 21, then a resumption of chemo on day 29 (a new day 1) for a year. The intention is to continue shrinking the tumor since, as we know, surgery is not an option and radiation has done all the good work it can do.   The course begins tomorrow, on Patriot’s Day 2010.  Wish me well as I make my way by you up the hill -

View from the summit

It’s less than three hours from midnight here in Boston, and I have been climbing through a rarified atmosphere so far this week.  I am tired, truly tired, and recently I have been uninterested in much more than taking the needed steps to get to the summit of this part of my journey.

Once I reach the top, I imagine that there will be level ground, a valley of sorts, perhaps, and time and place to rest for a while – maybe in a clearing, near a blue lake. Medically speaking, that is what the doctors suggest – freedom from radiation and chemotherapy for a month, time to heal and to move forward at a pace that is far less demanding than what I’ve dealt with since the week before Christmas.

I take heart from the December 31 words of May Sarton that I have found in my serendipitous book of days gift from the shelf at the MGH neuro-oncology suite:

The last day of what has been an uneasy and painful year for me. I look forward to dawn tomorrow and, as the days get longer, to begin to feel my way into renascence.  It is not strange though it is mysterious that our ‘New Year’ comes at the darkest time of the seasonal cycle.

When there is personal darkness, when there is pain to be overcome, when we are forced to renew ourselves against all the odds, the psychic energy required simply to survive has tremendous force, as great as that of a bulb pushing up through icy ground in spring, so after the overcoming, there is extra energy, a flood of energy that can go into creation.

I pray for each of you and for me that in the year to come we experience that force of creative energy and power, that certainty at the core of our being that comes not just in a blue moon, but as the result of a continual awakening to who we are at the center of our very being.

We’re all on this journey together, and you have made it possible for me to know this and to know that as long as we reach out to support one another in loving kindness, there is no mountain too high for us to surmount.

Happy 2010.

Each day brings an opportunity to give and share with loved ones.  This day has become the focus of giving in many forms, and in the spirit of the time I offer you these greetings of love and courage, compassion and strength to take as yours.

Heart In Voh, image by Yann Athus Bertrand

I salute you. I am your friend, and my love for you goes deep.  There is nothing I can give you which you have not. But there is much, very much, that, while I cannot give it, you can take. No heaven can come to us unless our hearts find rest in it today. Take heaven! No peace lies in the future which is not hidden in this present little instant.

Take peace! The gloom of the world is but a shadow. Behind it, yet within our reach, is joy. There is radiance and glory in darkness, could we but see.  And to see, we have only to look. I beseech you to look!

Life is so generous a giver. But we, judging its gifts by their covering, cast them away as ugly or heavy or hard. Remove the covering, and you will find beneath it a living splendor, woven of love by wisdom, with power. Welcome it, grasp it, and you touch the angel’s hand that brings it to you.

Everything we call a trial, a sorrow or a duty, believe me, that angel’s hand is there. The gift is there and the wonder of an overshadowing presence. Your joys, too, be not content with them as joys. They, too, conceal diviner gifts.

Life is so full of meaning and purpose, so full of beauty beneath its covering, that you will find earth but cloaks your heaven. Courage then to claim it; that is all! But courage you have, and the knowledge that we are pilgrims together, wending through unknown country home.

- Fra Giovanni Giocondo, from a letter to Countess Allagia Aldobrandeschi on Christmas Eve, 1513.

You have to do your own work.

Those who have reached the goal

will only show the way.

- Shakyamuni Buddha

The Winter Solstice

This year the winter solstice takes place at 12:47 pm EST on December 21, marking as it does the shortest day of the year, and the start of the return of the light to our world.

Here are two readings from Prayers For Healing, a book  of days I found at the neuro-oncology office at MGH.  People bring books old and new to share with others, placing them on shelves to have them leave with those inclined to pick them up and connect with them.  So you all and I get to share in the collected wisdom of many sources and many traditions.

First, as we leave the end of autumn and come into the first light of winter, reflected tonight on piles of snow bordering the Muddy River in Jamaica Plain, here is a reading from A Course In Miracles:

We attend in silence and in joy. This is the day when healing comes to us. This is the day when separation ends, and we remember who we really are.

Now, here is the reading to mark the winter solstice:

In the beginning was the Tao.

All things issue from it;

All things return to it.

To find the origin,

trace back the manifestations.

When you recognise the children

and find the mother,

you will be free of sorrow.

If you close your mind in judgments

and traffic with desires,

your heart will be troubled.

If you keep your mind from judging

and aren’t led by the senses,

your heart will find peace.

Seeing into darkness is clarity.

Knowing how to yield is strength.

Use your own light

and return to the source of the light.

This is called practicing eternity.

- Lao-Tzu, translated by Stephen Mitchell

May we all find and kindle the light within that inevitably brings us to the origin of all light.

This is my prayer for all of us in this sacred time.

The Everest I scale in my mind

By now if you know me you know that there’s a constant soundtrack of music running through my head, even when I’m not particularly interested in hearing it. Currently the song that’s playing is by Kate Bush, and is entitled “Running Up That Hill,” even though she originally called it “A Deal With God.”  Its words are appropriate to my life at the moment – I am now on the middle stage of this journey, and it’s all uphill – like an Everest climb, although that analogy is presumptuous, I realise.

Here are the relevant lyrics to the song:

Do you want to feel how it feels?

Do you want to know, know that it doesn’t hurt me?

Do you want to hear about the deal that I’m making?

And if I only could,

I’d make a deal with God,

And I’d get him to swap our places,

Be running up that road,

Be running up that hill,

Be running up that building.

Say, If I only could, oh…

Come on baby, come on darling

Let me steal this moment from you now

Oh come on angel, come on come on darlin’

Let’s exchange the experience oh…

With these words, and with the understanding that I can’t and don’t want to steal your place, or have you take mine, I will try to share with you all that being inside my skin feels like right now.  For the past week, as the radiation and chemotherapy continue to do their work, I have been undergoing random mini-seizures. I don’t remember the technical description, but here’s what they feel like.

I am climbing up a steep vertical surface, and below me an unseen hand is grasping first at my left toes, then my ankle, then the calf, in a rhythmic action of downward pulling. The feeling rises to a place past my knee, at mid-thigh, where it stops and then moves to my left hand, forcing it to clench and unclench. I am left-handed, so the sensation is one of loss of power and balance.  The first mini-seizure stopped of its own accord after my daughter came running in when I called – a time of about three or four minutes.

After consultation with the neuro-oncologist, I rethought my arguments against Ativan and accepted a prescription for a very small quantity – half of a half-milligram tablet. The disconcerting feeling of the episode, plus the subsequent exhaustion outweighed my fears of hallucination or worse.  As it happened, when the next mini-seizure occurred a day later, I couldn’t cut the pill in half and I took a chance with the larger dose.  In seconds – almost immediately – the symptoms were gone, although I was wiped out and quickly fell asleep.

As the mini-seizures continued almost daily through this past week, although not at the same time, it became necessary to consider possible causes other than metaphoric Astro grabbing onto me in some kind of Jungian workout. The cumulative effect of radiation is causing swelling of the brain tissue, and there also exist stresses and overexertion as potential culprits. I’m not eating regularly or at all, if I am asleep for long periods of time.  The immediate answer is to deal with the first issue, and increase the steroid dose I receive, tempering its anxiety-causing effects with Ativan as needed.  (Step carefully onto this spot in the snow and ice, test its ability to support you, and move slowly forward. Use aid from others wisely and mindfully.) So there it is at the start of week four.

As the hair on the right front side of my head falls softly like handfuls of grass to the carpet and I feel like a proto-punk front-woman for a second-rate band, I am grateful for my new home away from home, even as I miss family members and four-footed companions.  I keep climbing, counting the days, and preparing for the view from the summit and the journey onward.

Again, without you as my safety net, the ascent would be much, much more daunting.

Nebula NGC 2818 - a recent image from the Hubble telescope

In a universe like this, all miracles are possible – the miracles of love, compassion, and healing foremost among them.  I send you all this message today to hold as a meditation (as I am doing) on the infinite mystery of the divine, out there and within us. Even as everything changes in our world, the paradox is that nothing changes the creative and positive energy that infuses all of creation – even in the seeming chaos of all of it.

Peace, love, and much more as we continue on our intertwined paths -

The labyrinth at Chartres Cathedral in France

I debated about the title for this entry – Setback? Too negative. Switchback? More exact, but incomplete in describing the latest part of the journey I have undertaken.  I finally settled on the title and image you see above, and I’ll tell you why.

From the beginning, the voyage I began on July 19 hasn’t been a straight-line path (or even a simple stop-and-start process) that mapped the territory from affliction to recovery in any predictable way.  It isn’t as though I am traveling a terra incognita – I’ll bet thousands of people have undergone diagnosis and treatment of brain tumors like mine. But this experience has been like using a not up to date version of Mapquest, or trying to make sense of the unhelpful advice of a local when you are driving through the back roads of a truly rural area. “You can’t get theah from heah.”

So what else is new? The journey continues to take its occasional twists, turns, and to present its apparent roadblocks. Beginning this past Sunday, I was lucky to have to undergo only a brief hospitalization until Tuesday at MGH, after I suffered a small series of seizures on the morning of the radiation treatment intended to make up for Thanksgiving.  I never lost consciousness, and the intensity and duration of the events (there were several) were less dramatic than in July. Some areas on the left side of my body are numb again, and I have temporarily returned to using the walker. The consensus of the physicians is that one of two situations occurred – the chemotherapy medication I am taking has lowered the effects of the anti-seizure medication, and this hypothesis prescribed an increase in that therapy. The other possibility is that  the chemo and radiation are doing their work and the affected area (tumor and related brain tissue) has responded by swelling, which now calls for the use of a low-level steroid drug.

In any case, I continue this pilgrimage toward the ultimate destination of health and wellness with as much equanimity and good humor as I can muster. My bag of pharmacopeia tricks is larger, no longer fitting into the small zipped container I was comfortable carrying with me. Soon I will need a backpack, as befits a traveler on the path.

Lying in bed in a room on the twelfth floor of Ellison, between greeting nurses whom I am coming to know as a result of my earlier stays in the neurology treatment area, I started to think about the definition of the journey, since that’s what I have called this experience from the outset.  It’s the path of a pilgrim in search of fulfillment, a description arising out of my habit of finding metaphors to explain or underscore my experiences. Please indulge me – after all, I have written poetry for much of my life.

In the late 1990s, as I began to separate myself from corporate life in the computer industry, I returned to studies in cosmology, in myth and in symbol, work I had done during my graduate program in anthropology/archaeology. I’d read about labyrinths, and I followed research in the spiritual aspect of certain labyrinths that defined these forms as sacred space, a term that I knew from my own experience in archaeological sites and in quite otherwise ordinary settings. Mircea Eliade writes in The Sacred and the Profane: The Nature of Religion: “Every sacred space implies a hierophany, an irruption of the sacred that results in detaching a territory from the surrounding cosmic milieu and making it qualitatively different.” I’ve mentioned an aspect of this experience before, using the term numinous to talk about that moment and place when the clouds part and one sees the blue clarity and perfection of the infinite, when the door opens onto a perception of what lies beyond this world of attraction, aversion, or more often unconsciousness.

I began to read more about the labyrinth – not the labyrinth as maze, which is what we usually think of when we hear the word – but the labyrinth as characterized by one of the more familiar versions known today – as the illustration at the start of the entry shows, and as this link describes in far greater detail than I will offer here, if you are interested.

I will say this much: when one begins to walk the path of the labyrinth, the journey circles its way around a visible central destination, and the traveler meditates on the path, on its beginning and on each step that brings him or her to the final central destination and then out again, richer for the experience and ideally wiser than before the journey began.  You can say many things about this experience – that with each step one sloughs away mundane concerns, and with each turn one spirals deeper inward in a meditation on the destination, then to the return.

There are times on the walk that the center, the realization of the journey are in clear sight, not distant or unattainable. Then one takes a turn, a kind of switchback, and the center is no longer visible, or it appears farther away than ever.  The point, however, is to remain centered and focused on each step, to remember that the experience is the sum of its steps, each one taken mindfully and in awareness of the sacred nature of the time and space in which the journey is taking place.

How could I have forgotten this?  One of my dear friends on the Cape has a labyrinth at her home, and as recently as last year I walked the path.  But I also wrote about the labyrinth experience in my master’s degree thesis about sacred space!

As I write these words, another friend is undergoing her own unexpected journey through a serious challenge toward health and wellness, and my cousin who has accompanied me on several visits to doctors is recovering in Fall River from very recent emergency surgery.  We all have our paths to walk, forgive me if I say this again and again, and we don’t walk alone, in that our meditations and our awareness of the sacred within and around us open our awareness to the knowledge that we walk in spirit together.

I expressed my gratitude to loved ones yesterday, and to you all today, because every day is one of thanksgiving – that as I round the turn, the destination is present before me and in my heart, as you all are.

Example of a radiation mask - not mine

A coda to my latest posting, although strictly speaking it’s not the tail of the tale, but its head (caput, for you former Latin students.)

On November 17 I underwent a simulation process at Mass General prior to actual radiation treatment. This activity involved the fitting of the mask they’d made for me and a subsequent calibration of the radiation beams, with a low-level dose of radiation prior to The Real Thing on the following day.

The radiation low-level simulation was a curious experience, with echos for me of feverishly imagined medieval torture practices made modern. The patient (YVT) wears a tightly fitted life-cast apparatus that affixes one to a metal table, the effect brought up to date by the use of plastic mesh to comprise this covering, instead of iron.

Perhaps it is better to describe the feeling as being like an aquatic creature caught and immobilized in a net for 20 minutes. Even stranger for me, though, was the presence of an occasionally astringent, almost marine odor like an unusual disinfectant. I thought it was something in the room’s air to sanitize the place, but the scent was noticeable only when the flash of the radiation zap occurred.  It turns out that the experience was a figment of my olfactory nerves’ imagination, triggered by the rays as they passed through that part of my head. “A few people comment about it,” said the technician. “Not many, though.”

Before each regular radiation treatment there will be a preceding ritual of several hours of taking antibiotic, anti-nausea, and anti-tumor chemo medications, carefully timed to allow for the synergy with radiation and for minimizing side effects.  Yes, all the Temodar literature says that the drug is notable for the lessened impact of side effects, and I trust that is and will be the case. On November 18, though, with medications not available until the FedEx truck showed up just before we left Ashland for MGH, that experience awaits me on November 19 and most days thereafter until the end of the year. Radiation is a 30 day process, while this part of the chemo regimen lasts for 45 days, more or less.

The Real Thing on Wednesday was surprisingly quick and uneventful, although I felt a bit disoriented and dizzy afterward.  This could have been due to hunger, since I understood that one was not to eat until after the treatment. No marine odors this time, perhaps because there was more going on and I wasn’t paying as much attention to odors.  On the drive back to my daughter’s house I dozed and once there, ate a hasty late lunch and promptly fell asleep.

Back tomorrow, and tomorrow, and Sunday, to make up for Thanksgiving and the day after – no radiation on Black Friday (isn’t that what people call it?) And on, and on.  I won’t bore you all with as many details of the actual activity as I’ve offered this once.

I will tell you this, though – as the machine moved around me, I was as calm as I have been in other related circumstances.  I kept thinking and mentally repeating “Goodbye, little Astro.  Time to go now.” I saw a little white faceless form turning away and moving slowly, slowly down a long tunnel as searchlight beams illuminated it  in an on off, on off action. I trust  and affirm it will keep shrinking in the light and moving out a little more each day. Whatever its purpose has been is ending, and the dance may be over before it has ever really begun. Time will tell.

Since I last posted an entry here, I have been struggling mightily to stay on the path I saw lying ahead of me. The radiation team at MGH set the treatment schedule beginning on November 18, almost four months to the day after the seizure that began this journey. Appropriately enough, the last radiation session is scheduled for the last day of the year. The neuro-oncology group established the regimen of chemotherapy medication that I will take at the same time, along with medications to control nausea and reduce the possibility of pulmonary infection (an occasional side effect of the chemotherapy.) For thirty days then, I receive radiation, and for 42 days I ingest the chemo meds.
For someone who has not taken much in the way of medication, the chemo regimen was a bitter pill to anticipate swallowing (the pun is intended) and on the day I went for creation of the mask I must wear during radiation, the reality of that part of the treatment set in dramatically.
It’s been difficult for me to maintain calm and find equanimity during the past couple of weeks, try as I might. As a result, I returned to my old habit of retreat, searching for some escape from the concerns I continue to experience regarding incomplete or incorrect communication between me and those who seek to support me through this progression toward good health. In looking for solace by distancing myself from others, I have managed to lose the path.
This morning I am finding my way back, stumbling through the dark toward the track that I trust is the right way. Today I undergo a dry run simulation of tomorrow’s first treatment, and as I write these words I am looking for some sign of order, of events moving according to plan. For example, the phone just rang and the pharmacy in Florida that promised delivery of the drugs today informed me that there is a current shortage of one of the meds and as a result I would not have the needed medications in time to begin the treatment as scheduled, despite all manner of promises to the contrary from several people at the company yesterday.
Why did this happen? Because incorrect and incomplete communication on several levels last week and yesterday held up the original order on two separate occasions, despite my best efforts to ensure that people were talking to the right people and receiving whatever it was they needed to get their work done. Welcome to healthcare in 2009, and welcome to samsara, where everything can change at a moment’s notice.
What to do? I have lost my composure again and again, to the point of believing that I am totally at fault, that I have lost my ability and my mind for handling complexities. I am bushwhacking through the underbrush with a plastic knife and it’s been too dark to see where I am headed.
In the worst of dark nights recently, I returned to meditation on impermanence, turning the curse of constant change and uncertainty into a reminder that this too shall pass. Somehow, with all of the struggles we undergo we do find the way to where we need to be, and there is an order I can’t always see from where I stand in the midst of seeming chaos. Sometime in the not too distant future, I will look back at this period of my life and understand the part these events play in my journey through it. That which does not destroy me makes me stronger and I will find my way.
The thoughts and prayers I continue to receive from many of you sustain me in the meantime. In turn, I send my thoughts and prayers for healing to several friends who read my words as they go through their own similar journeys to surmount their challenges. We are one in our shared experience, and in the love and compassion we share as well.

Julius Caesar Crossing the Rubicon, 15th century manuscript

Yesterday I met with brain cancer specialists from Tufts Medical Center, the source of my second opinion, and possibly of my treatment for destruction of the brain tumor. I was still undecided about which team to choose, though I had begun to lean somewhat toward MGH. I hoped to gain greater clarity by speaking with the leaders of the Tufts team and to learn more about them.

While I often spend a lot of time analyzing decisions and choices (my daughter Sarah sometimes correctly refers to it as “overthinking”) at the same time I also irrationally seek signs and portents around me. As my cousin Al and I walked past the floor-to-ceiling windows of the eighth floor in the hospital building, the mists of a gray rainy day swirled around the structures below, an exterior version of my internal landscape. There wasn’t a clear view outside – or within. Once we arrived at the waiting area, a TV provided us with breaking news of the stabbing of a doctor and the killing of a patient at MGH. Self-involved as I was, my first thought was – is this an omen? The other horrors in the news of the day followed, and soon I longed for calming music and video footage of fields in springtime, the orchards of the PET-CT room at Brigham and Women’s, beaches, anything to free my mind and help me to see clearly.

After the standard check-in process, I met with the doctors who direct the activities of the Brain Tumor Clinic, along with the nurse practitioner who is a vital part of the team. I continue to be awed by the intelligence and sensitivity of so many of the medical professionals I’ve seen at both hospitals, who serve people like me so well – their insight, their patience with my many questions, the level of detail that they offer in explanation of conditions, diagnoses, procedures, and processes. I felt that this team was ready to walk the road with me in full support of my situation, with all the baggage I bring along with me. My baggage – I laughed about that with the doctors, sharing the Latin word for baggage, impedimenta, and acknowledging that much of it, such as my over-thinking, was indeed an impediment to my forward progress.

Misty rain and late afternoon darkness had settled in to hide the view outdoors as my cousin and I passed the large windows to take the elevator down to Washington Street. Once in the car, I confessed that I was more confused than ever about the right choice, even though upstairs the doctors had concluded our meeting by saying what everyone else had already told me – it would be an instinctive sense of rightness that would guide my decision. I had told them about my daughter Maya’s comment regarding the right dress. “Go home and try both of them on,” Dr. Zhu said to me. “You’ll know soon enough.”

Back at Sarah’s home, we had a quiet dinner and afterward she asked, “Ready to toss a coin?” I wasn’t, and all I could do was to repeat my wish for clarity of choice. Then I did what I often do when things overwhelm me – I went to bed. I kept thinking about my baggage, and ninth grade Latin, and Caesar crossing the Rubicon. How presumptuous of me to equate myself with him, I thought just before I drifted off to sleep.

At one-thirty in the morning, I awoke with a start. My laptop still lay open on the bed next to me, and as I closed it I said to myself, “Alea iacta est.” The Latin version of the coin-toss, maybe, or the intuitive decision based on everything I had considered regarding timing, past events, family, everyone and everything involved. The phrase Julius Caesar is supposed to have said as he crossed the Rubicon. “The die is cast.” I knew what I had to do.

In my situation, my life is cast. Once again the background music that plays in the film version of my life started up and this time it was Johnny Nash, singing
I can see clearly now, the rain is gone,
I can see all obstacles in my way
Gone are the dark clouds that had me blind
It’s gonna be a bright (bright), bright (bright)
Sun-Shiny day.

Onward I proceed with the neuro-oncology team at Mass General Hospital.