Progress

What an extremely difficult, draining night.

I had a great chat with one of my bosses at a diner before he began his shift at the paper this afternoon. I had some Buddhist statuary and a few books I wanted to give him. I also wanted to express in person what a pleasure and privilege it has been to work with him for the better part of a decade.

Then I stopped at the paper for a brief visit to say goodbye to colleagues who work irregular schedules or only on weekends. Toward the end of the visit I was overcome by weakness and lightheadedness. What made it scary was the complete sense of helplessness that coursed through me. I met a friend for pancakes and bacon, of which I ate practically nothing.

When my father's 95-year-old sister lay dying a few years ago, her mental faculties were stunningly sharp. My mother remarked, though, that she seemed to be floating between worlds, that she was aware of but not absorbed in the circumstances of this one. She was waiting to let go.
And that's precisely how I felt tonight.

My cats are being given a new home tomorrow.
Things are moving along.

Love

I had the best Christmas I've had in years thanks to the hospitality of my brother-in-law's cousin and his wife, two of the most compassionate and warmhearted people I've had the pleasure of knowing.

About nine of us -- an assortment of siblings, extended family and their children, and friends -- gathered for a Christmas dinner that soothed the stomach and the soul.

I cherished the long talk I had with the host. He's an emergency medical technician who has restored life and hope to people in the most desperate of situations. And as a result of his past health issues, he has come face to face with death on three life-changing occasions. We related to each other that evening in a way that transcended words.

Life pretty much boils down to love, we concluded. Love, and compassion.

***

The Oxycodone I was prescribed is working with just mixed success now, and this after less than a week. Under a new strategy, it seems I'll soon be taking OxyContin twice a day, with Percocet interspersed as needed to deal with "breakthrough pain," as the nurse calls it.

I feel myself getting weaker, but I'm trying to continue as many elements of my regular routine so as to keep my spirits up. A lot of the time, the simple task of sitting down at the computer to add to this blog seems insurmountable.
But then, I'm typing now, so ...

I'm turning in my disability paperwork today, thus making pretty much official my decision to leave work -- not that this decision is a surprise to anyone. But turning in the forms is a big psychological step.

I'm enjoying a cup of my favorite green tea as I type this. I haven't had this tea, one of my life's true simple pleasures, in a week or more.
I had forgotten just how good it is.

Merry Christmas!

Happy holidays to all of you who mark them!

The Oxycodone pills allowed me to sleep last night, though they leave me a little unsteady on my feet. It was a gift, though, to be relatively pain free.

I left work last night after just two hours, unable to find a comfortable sitting position. In the end, the discomfort in my legs won out.
I was supposed to work today, but I just don't feel up to it.
In calling in sick today, I told my supervisor of my doubts that I'll be able to return to work. He has been incredibly supportive of me during my health struggles, as has everyone at the newspaper, The Record of Hackensack, N.J.
I'm very proud and grateful to have spent nearly nine years of my life at that paper. I have learned much there and have grown immeasurably, personally and professionally. It has been the best job I've ever had, and the people I've worked with have made it thus.
Two of my best friends, who just happen to be Record colleagues, have eased my burden tremendously by offering to do my laundry and hiring someone to clean my apartment.

My family and friends couldn't possibly be doing more for me, and this is so humbling that it's impossible for me to put into words. Any expression of gratitude on my part seems so inadequate.

I'm the first to admit that I can be a very difficult person to deal with. I can be stubborn, sanctimonious, arrogant, unfairly critical and judgmental, hypocritical, and a host of other things. I've alienated people at work and in my personal life because of these traits. But, in spite of that, to still be the recipient of such kindness ...

In a beautiful confluence of circumstances, all this is happening during the holidays. I can't think of anything that embodies the spirit of the season so purely and so well as this soothing stream of support that is washing over me.

New prescription

My leg pain last night was unbearable.
I was literally moaning and screaming, which I can do without alerting the neighbors because my home is relatively secluded.
I got a new pain prescription today, which I'll take when I get home from work. Percocet, taken even two at a time, weren't at all effective.
Tonight should be a quieter night.

I spent a good part of the day today napping. I think getting a full night's sleep may leave me with more energy for tomorrow.

Untitled

I've trapped myself
into sniffing out death
around every corner
and when panic attacks
reveal a minuscule glimpse
of what I most fear
I recoil in terror
and scream "Oh Shit!"

Am I the pursued
or the pursuer?

I'm learning
that if you go fishing
you catch fish.

That was scary ...

I was in the shower not 20 minutes ago when I experienced the weirdest sensation.

I was a little unsure of my footing, and then I felt what I can describe only as an electric pulse passing through my body. My legs lately have been excruciatingly painful below the knees. In the shower, this pulsing affected the same part of my right leg, but there was no pain. It just tingled. My leg felt as if it weighed nothing. It felt as if a current were passing through it, and also through my body, from my head to my feet. I felt manic, as if I were being invigorated by a surge of energy.

I could feel my pulse accelerating wildly (in fear), and I worried whether I would be able to breathe. I wanted to jump out of the shower and call one of my sisters because I felt sure this was the end. I started to panic, but there wasn't any pain.

I probably was just feeling a bit woozy after having slept a good part of the day. And if not that, then there's some other physiological (or psychological) explanation. I don't go in much for mystic bullshit, even though I sometimes would like to.

But it was an odd sensation -- noteworthy enough to write about.

Update at 5:30:

I had another, much more powerful sensation about a half-hour after the first. A friend of mine is sure they were panic attacks, and I'm inclined to agree. It has been so long since I had one, though, that I forgot what they were like.
It seems that I'm so preoccupied now with waiting for the end to arrive (I know I'm being a fool) that I'm misinterpreting things and giving them meaning they don't have.
Going back to counting the breaths is what I need to do.

Loose ends

Ahhh, so much to share.

First, thank you all for your recent comments.
I haven't had the energy or focus to answer them in the timely manner to which I'm accustomed. I just haven't been at the computer much these past few days.

I'm not going to try to describe all of the recent events and feelings in perfect chronological order.
It has been a mishmash of emotions, and I suppose this post will reflect that ...

On Thursday, I met with one of my surgeons -- my first surgeon, actually. We were discussing palliative care as my illness enters its final stages. He joined in consensus with my other surgeons and doctors that I have just months at this point.

I have been experiencing excruciating pain recently in both legs, from just below the knees down to the ankles. The pain, tolerable during the day for the most part, hurt so much that I had been unable to sleep for several nights and was suffering for it. The surgeon on Thursday prescribed Percoset, which helps a lot but sometimes takes longer than I would like to take effect. I don't think I would be able to cope without it.

The painkiller prescription brought me face to face with an issue I had been reluctant to confront. I want to preserve my natural state of mind, such as it is, to the greatest extent possible. That is, I want to be aware of what's going on around me and inside me. I was worried that narcotic painkillers would dull this awareness, and this nearly lifelong fear was keeping me from doing the right thing. But I don't want to be in pain, and I need my sleep. So, I'm taking Percoset without hesitation.

A dear friend in Kyoto admonished me during a visit there four years ago that I should let flexibility become my most important weapon. She said it would help me confront this illness and adapt to it, rather than become mentally, spiritually and physically rigid to the breaking point. I see that she is right.

Given that toxic levels of calcium in the bloodstream can have far-reaching effects on a person's brain chemistry, I consider myself pretty blessed to have my faculties at this point. So, I think I should try to enjoy them pain-free.
As my aches and pains increase, it's amazing how quickly stoicism flees my body.
There are no brownie points in being a martyr.

I'm finding it difficult to live on my own now -- coping with the stairway to my apartment while carrying laundry or groceries, trying to keep the place clean and so on. My doctors are imploring me to be careful because a fall could be catastrophic.

Soon, I'll be moving in with my brother in New York. I'll have my own room, the tremendous help and comfort that he'll provide, a visiting hospice service, an instant circle of new friends (my brother has lots) and a simplified lifestyle.

He graciously is allowing me to bring my two cats with me. I've declined the offer and instead have found a new home for them. My brother isn't a cat person. And frankly, it's time for me to let go. If I wouldn't be seeing to the cats' future now, then it would have to be done for me soon enough and the timing won't be the same.

I'm going through my possessions now -- books, to start -- and am earmarking things for family and friends. The trash and treasures I have accumulated over a lifetime have given me much joy, and I want to share that joy now. I think it would be a great emotional burden on my family to try to distribute things the way they think I would've liked.
I am taking indescribable pleasure in this process of giving. Truly, I want for nothing.

On Wednesday, I called my karate teacher to tell him that I can no longer study my beloved martial art. I told a friend of my decision. "Sure, you need to stop if you're no longer getting anything out of it," she said. I corrected her: It's not that I'm no longer getting anything out of it. It's just that I can't bring any more into it. Classes were leaving me feeling as if I were coming apart at the seams.

I visited the dojo Saturday with bags of books for my teacher. The morning's class had just ended and most of the students had gone home.

Sensei invited me out onto the floor. "Just follow me as I do these moves," he said. "We'll do them slowly. Don't do what you can't."

He led me in very slow, measured, gentle steps through three kata. I knew these were advanced, black-belt-level kata but I can't recall seeing them performed in the dojo and I'm not even sure of their names. I am a brown belt. Were I to continue studying karate, I wouldn't have been taught these kata for several years to come.

I was overcome with emotion at the profound emotional and spiritual meaning of his gesture of symbolic instruction.
Words won't work.

Thursday, I visited my mom.
Of course it was great to see her, but I was arriving just two days after my eldest sister and her husband told her of my medical situation. I'm sure my physical appearance when I walked in the door provided all the details she needed to know.

The lighting in my apartment is very forgiving, very flattering. Facial shadows and lines are softened. Harsh angles are mitigated.
It's photographer's light.
The lighting in my mom's house is bright, all-revealing, unsparing. When I undressed to shower, I saw myself in the bathroom mirror as if for the first time. I was shocked. Frightened.
My ribs are painfully well-defined.
There's very little meat on my bones.
Muscle tone is nearly vanished.
I weighed about 155 pounds when my fight with this illness began six years ago.
I'm 116 now.

But, the day before I went to my mom's, I had a massage of my legs, neck and shoulders, which really helps with the pain, at least while the massage is being done.
I asked the masseur -- a genius of intuition and healing -- if my energy level felt as low to him as it does to me.
"No," he said. "It's actually quite strong."
He went on to relate a story about one of his clients, a woman in the final throes of lung cancer. "It made me want to cry," he said, "because when I placed my hands on her body I felt nothing. No energy. It was as if she was hollow inside."
So, I suppose I'm luckier than I think.

And finally, I have learned that my blog has been linked to the Tricycle magazine editors' blog. In the brief blurb about me, I'm described as a Zen practitioner. How ironic: A Zen practitioner without a sitting practice to speak of. I don't know whether to laugh or cry and, in fact, I did both.
I'm not sure what the hell I am anymore.
And I want to work on accepting that.

***

You know, my blog posts these days add increasing levels of doom and gloom.
It reminds me of a Daffy Duck cartoon that I particularly enjoy.
Bugs Bunny and Daffy are in the circus and are pitting their talents against each other.
Bugs, the consummate showman, repeatedly towers above Daffy's attempts to outdo him.
Daffy gets desperate.
He devises an act he's sure will outshine Bugs'.
He begins swallowing every explosive, every flammable substance he can lay his hands on.
Then he lights a match, swallows it and is blown to smithereens.
"You were excellent!" raves Bugs Bunny. "That was great! They want an encore!"
As Daffy's spirit ascends to heaven, he says ruefully, "Sorry, but I can only do that trick once."

Secrets

Today was a very difficult day psychologically.
Today the realities of my health situation were shared with my 87-year-old mother.

My eldest sister and her husband thought it would be easier to deal with all around (but particularly from my perspective) if they went out to my mom's house and delivered the news face to face. This way, my mother's reaction could be guaged and the flow of details could be adjusted accordingly and conversational detours made.
I would then call her on the phone (we live about 50 miles apart). I had already made arrangements today to visit her Wednesday.

My prognosis was shared in a way that didn't mention death outright, but she is under no illusion that the outlook is anything but discouraging. Things were put in such a way that rays of hope were allowed to shine through. Thank God for rays of hope.

My sisters and my brother and I all were worried about how she would handle the news, about how she would bear up under the stress of hearing the worst news a mother can receive. But, not surprisingly to us, her example instead has revealed our own weaknesses, not least of which is underestimating her exceptional ability to handle crises with grace, compassion, love and calm. You would think we would know better by now.
And besides, she already had a very good idea of what was going on. Underestimating her maternal instincts was just another well-intentioned foible.

So, now, I have precious few secrets left.

Untitled

Facing death
recalling the "virtues" of my life
(why am I keeping score?)
letting the foibles haunt me
Who am I trying to please?
What am I measuring up to?

Untitled

I'm curled up on a bed in an ER exam room. An elderly woman lying on a gurney rolls by my door.

The gurney stops for a moment.
She turns to me and her tired, sad gray eyes meet my tired, sad blue ones.
Whisper acknowledges whisper.

Then she slowly turns away as the gurney moves on.

Kindness

Worried friend stops by
with a hearty meal
"Enjoy these blessings while you can,"
says I to me

Moving closer

This weekend, the Zen Buddhist community to which I belong held an intensive three-day period of zazen, or sitting-zen. This event, which in Japanese is called a sesshin, was held to commemorate the day on which tradition holds that the Buddha achieved his breakthrough to complete and perfect understanding, which many call enlightenment.

I joined the group, or sangha, today, the final day of the sesshin. After a closing meal, my teacher presented me with a kit to sew a rakusu. Rakusu are the bib-like garments that symbolize in vestigial form the robes worn by Siddhartha Gautama, who would become the Buddha, as he set out on his journey of spiritual and self-discovery.

Sewing the rakusu is in preparation for the February ceremony in which I will receive the Buddhist precepts and publicly (and internally) proclaim my commitment as a lay practitioner.

My spiritual searchings have led me over varied and beautiful terrain over many years.
Have I arrived at my "spiritual destination"? I really don't know. I just don't know. I know that I'm afraid of being a spiritual dilettante, but I don't think I qualify as one. It's just time to settle down. And, now that I look back on it, I have been moving inexorably toward this decision for 15 years.

Anyway, these paths I have followed seem to me to be roads leading up the same mountain.

Untitled

Frightened beyond words
by that final anxious moment;
Hoping beyond words
for a journey to the stars

Voices from the subconscious

A poem?
A poem? At a time like this?
Are you crazy?

Oracle of philaDELPHIa

Gerald "Ski" Evans
Mentor, friend, karate teacher, chess fanatic, gentleman

I spent Saturday in Philadelphia with my longtime friend and mentor, Ski.
I hoped to talk with him about my worsening medical situation. I wasn't seeking advice necessarily, but I always find that when he and I discuss something, I invariably walk away with a deeper understanding of the matter at hand.

We skirted the topic of my health. The crux of the conversation was Ski asking me if I believed in reincarnation. I have no idea what happens after death, I answered. I neither believe nor disbelieve in reincarnation. "You will," he said.

We wound up going to a big chess tournament at a Center City hotel where I met old acquaintances, made new ones and took photos of people engrossed in pitched battles fought over 64 squares.

Coming out of the tournament, Ski and I discovered that my car had been towed. I swear, that car is a magnet for the parking authorities.

I came to Philadelphia wanting to talk with Ski about mortality, perhaps seeking advice even though I wasn't aware of such an intention.
We instead went to a chess tournament and my car was towed and I spent a couple hours getting it back, paying $125 cash for the tow and owing $41 for the fine.

And perhaps therein lies the answer: Life goes on.

Anniversary

On this day in 2005, I began this blog as a chronicle of my fight against parathyroid cancer.
It quickly grew into much more than that. It became an outlet for my poetry, photography and random thoughts. And it also has served its original purpose of detailing my ups and downs, and will continue to do so.

To my regular readers, thank you sincerely for sticking with me these two years.
To my newer readers, welcome aboard. Speak up now and then.

Journey of a lifetime ...

I had a consultation this afternoon with the surgeon who performed my latest operation, in July.
We have a very cordial relationship built upon mutual respect, and we indulge in precious little beating around the bush.

He told me that future surgeries at this point seem futile. As anxious as he is to help me, my body seems just as determined to destroy itself. My surgical history is a long, painful, expensive series of failures. For the record, I'm 0 for 5 over the past six years, 0 for 6 overall. As the surgeon put it, operations seem to help me for about 10 minutes, and then the situation reverts to what it was, and with a vengeance.

I expected this conclusion, in large part because I felt it within myself. It's not rocket science. I knew, especially after July's unsuccessful surgery, that we were reaching the point of diminishing returns.

Given the progression of the illness and its ability to thrive as well as it has, he said that it may well come to pass that I'll be incapacitated within six months. I'm not so sure about that timing. Especially if I have something to say about it.
But, I agree that my joint pain, which has led to decreasing mobility, is going to prevail at some point, quite possibly sooner rather than later. And my headaches, which occur several times a day and can be debilitating, are likely here to stay, as they have now for years.

I'll learn to adapt to all that, hopefully. But what most scares me is that I'll lose my mental faculties. I need to live this, and to know that I'm living it. I need to be aware. This is important.

My doctors and I are going to explore the possibility of radiation therapy, knowing from the start that this cancer doesn't respond well, if at all, to radiation. But because the therapy won't do much damage, we have little to lose.

The focus now is on making me as comfortable as modern medicine can, and keeping pain at manageable levels.

A friend suggested I get a second opinion, even a third. But my surgeon is one of the world's top specialists in this disease, and I have the best minds at two of the world's leading hospitals employing everything but alchemy to try to help me. And alchemy may come next.

Sure, I could go around to different doctors until I find one who tells me what I want to hear, but one of my mentors has a term for that: mind-fucking one's self. The indelicate imagery is dead-on. Reality is what it is, whether or not you accept it.

Tonight, I spoke to a friend of mine who is a Zen priest. I plan to receive the Buddhist precepts from her within a month or two, forgoing the usual year's preparation for what is called the jukai ceremony. I began the process a couple of years ago and got a few months into it before my laziness prevailed.
Time was a luxury then.
It isn't now.

I feel the need to declare my spiritual and philosophical beliefs as a way of addressing the tremendous doubt and sometimes paralyzing fear I feel within me. And the jukai ceremony certainly is a public declaration.
Who knows, I may recant everything when my final moment arrives. Nonetheless, I think jukai will be useful. If I'm misleading myself about my motives for jukai, then my priest friend will be the first to tell me -- if I don't beat her to the punch.

I'm simultaneously comfortable with and terrified by the unknown.
Maybe jukai is just me grasping at straws.

I'm not sure I've fully processed all that has happened this momentous day. It certainly has a dreamlike quality. I've gone over and over what was said by my doctor, what was said by me. At times, I've choked up and have felt tears form in my eyes. I also realize the inevitability of all of this -- for me, for you, for us all, and this gives me great comfort. Some very difficult and conflicting emotions are waging war within me now, and I hope peace and acceptance soon prevail.

This has been a difficult post to write, not at all the way I wanted it to come out.
But life is like that.

I've been expecting you
but not eagerly
Won't you have some tea?

Thoughts on a Wednesday afternoon

Embers cool quickly
as the last bundle of sticks
is burned ...
my thoughts are
distant
clouded
wrapped in gauze
my body weighs
as much as the universe
I just want to sleep
and sleep

Calcium dreams

Sometimes the most interesting, seemingly abstract thoughts come to me wrapped in the gossamer veil that floats between wakefulness and sleep.
That seems to be when the good stuff bubbles to the top, unbidden.

Pick a dream
from the catalog
and wrap yourself
in it
then fade
to black

And yet ... and yet ...

As a follow-up to yesterday's post:

The flip side to whatever emotion we're feeling is just a heartbeat away.

(Thanks, Emiko-san. It is a wonderful world.)