The Fifth of May

Posted by on May 5, 2012 3 comments

My wife and son are out of town for the weekend, so I stayed with my father last night. We spent most of the evening waiting for my stepmother’s plane to arrive, listening to the Red Sox on the radio. They lost, but fortunately the game lasted 13 innings. We didn’t have much to say, nor need to say it. Listening, together, is enough.

This morning we went out to breakfast at Roy’s in Auburn. I asked if anyone remembered where I was a year ago.

“I do,” my stepmother said.

“I made it: one year”, I said.

On May 5, 2011 my brain tumor was discovered and I was admitted to the hospital. The tumor was to be removed in brain surgery the next day, if it proved operable. Otherwise: an opiate-lubricated slide into darkness and death. I reminded my wife: if I’m a veggie, pull the plug.

One year later, I remain anchored to the events of that day. It is now, perhaps, more important than my birthday. What are “years of age” to a terminal cancer patient? Some pile of ticket stubs. The one year I have survived is like a charm in my pocket.

She invited me to celebrate next year’s Fifth-of-May back at Roy’s (with the whole family) and added the event to her iPhone calendar.

“I look forward to it,” I said, pleased. I might not make it, but if I do, I think it’s going to be fun.

In the afternoon we all rode down to Westbrook for a celebration of various milestone birthdays in my brother-in-law’s family (30 years, 60 years). The birthdays are not particularly close to May 5, but I suppose “Cinco de Mayo” is a good day for a feast.

We arrived early. As party supplies were hauled inside, one of the balloons escaped. I sat in the car and watched it float into the sky. At first I could see its sunny side and its shadow side and the twinkling ribbon tail. In a few minutes it diminished to a tiny speck. I was aware, at the time, of the convenience of this metaphor to a mission of tortured self-distinction: a man elegantly disappears and no one notices.

Inside, the crowd swelled. I was not uncomfortable, just bored: self-righteously bored and possessed of the opinion that I need not pretend otherwise; not afraid to mingle, but enclosed in the conviction that it would be pointless and false. I would say that I was content to sit and watch, but I fear it’s becoming impolite. My habit of seeing everyone in the room, of lingering on the brighter faces, of casting the women in fairy tales, might in decades past have passed for adolescent curiosity. Now it’s just creepy.

I pulled the bill of my cap down over my eyes, or focused on the empty soda can on the table in front of me. Yet reflexively I would turn, and see someone looking at me. Again, I index the lore of my social anxiety: I am sensitive to being looked at. That is why, if you look at me, I will see you looking at me. Am I projecting the annoyance and confusion I have seen upon meeting their eyes, as if I’m a crown of flies? Am I some sort of optical glutton, taking more than my fair share of sights? I covered my face.

My father rescued me. Thirty years ago he might have questioned my “attitude”, but today he understood. With rare sincerity he asked if I would like a ride home. I seemed tired. I would, and thank you. Later he acknowledged we each would often rather be alone. True, true.

I found flowers on my doorstep: purple tulips in an antique brown-glass pint bottle, with a card addressed to “BOGART”.

I’m not sure if the one-year anniversary of a brain cancer diagnosis is something you feel like noting, but I can’t help thinking about the last year and all you have done… this bottle from Tunk being one of them.

I looked more closely at the pint bottle. Apparently it was the one I rescued from ten feet of water in Tunk Lake last August, during a visit to our friends’ camp, when I craved to be in the water. They cleaned it up, gave it a nice bow. Lettering in the glass warns:

FEDERAL LAW FORBIDS SALE OR RE-USE OF THIS BOTTLE

I think we’ll get away with it.

366 days since my diagnosis

One (leap) year, still kickin'

Gettin’ Done

Posted by on March 31, 2012 4 comments

When a Mainer quits his job, we say he “got done”.(1) You can say that about dying, too.

He got done. Cancer.

I imagine a man who got done as an old carpenter. I was a young carpenter once, and that was hard enough: hauling plywood, roofing, demolition, in baking sun and bitter cold. It’s hard to say what getting done means to an old carpenter. Did he retire? Or did he just wear out? How many 65-year-old carpenters do you see?

Back in 2000 I joined a building crew. I went to Home Depot to buy a tool belt. An employee in the tool aisle looked like he might be an old carpenter: grey, solemn, a bit bored. Years later I saw how plainly a new, stiff pinkish-brown cowhide toolbelt screamed “rookie”.(2) I can only imagine what he thought of me, the opposing pole in the world of men at work, eager to trade my skin and bones for the thrill of building. With a couple years of hard labor I proved to myself that I could endure and thrive in that world. After that, it was just work.

It took me ten years to sour on web development. I was listless, frustrated, then just sick, because of my brain tumor. Now that I’m back to work (part time), with renewed energy and focus, I remember why it fascinates me. But I also remember I’m likely to die within a few years. It tends to dampen my enthusiasm for learning new programming languages and techniques.

In some ways, I’ve been “gettin’ done” since the day of my diagnosis, when I wrote down the master passwords for my servers so they wouldn’t die with me in surgery. I had already acknowledged the failure of my web hosting venture (when I took a full-time job), but I still hosted a few dozen web sites and people were relying on me to maintain them.

Ever since that day, I’ve been working to shut down my servers. Relocating client sites to other hosts has been a continuous reminder of how silly I was to get into the web hosting business in the first place. It is also a lot of work, none of which I deem billable, thus no surprise my standard of service has fallen. There’s a phrase for that, too: “mailing it in”.(3)

I attended my brother’s fiancée’s mother’s funeral on Thursday. Janet Dee (Lyman) Eustis died of cancer March 26 at the age of 47.

I drove our car in the funeral procession from downtown Auburn to Gracelawn Memorial Park. It’s a fascinating process. Apparently, nothing shall interrupt a funeral procession, red lights included. Road work yields, too, or so I thought. In fact it was the City of Lewiston Department of Public Works, with their road-building equipment, lined up on Turner Street, hats off, heads bowed. At the end of this line of Caterpillar yellow, blaze orange, safety green, grey beards and camo, a blinking message board spelled out this tribute:

to the family of
Janet Eustis

Our deepest
sympathies

I teared up, seeing all of those guys standing in the cold rain, honoring Mrs. Eustis and her husband Mark, who still works with them. I thought about what I would want for my own funeral. But that barely matters. A funeral is no service to the deceased. It’s for the survivors, to prove their bonds. I was there for my brother and his fiancée, and thankful to have the chance to tell Mark that I was sorry for his loss.

But I was anxious and surly for most of the day, passing a bit too close, perhaps, to the realm of death.

I returned to Aikido class this morning after a few weeks off. At first I doubted my balance and my strength. “Don’t mail it in just yet,” I thought. I subscribe to the “use it or lose it” theory of capabilities, that I’ve got to show up and practice if I want to get better.

I stabilized, despite a feeling of tunnel vision and numbness in my toes. Our venerable chief instructor, Kiff, has suggested I could test for promotion to “nikyu” rank this fall if I practice twice a week. It’s great exercise (which I sorely lacked in winter) and good discipline. But with warmer weather coming I think I’ll prefer windsurfing.

In some ways it is surreal to be practicing Aikido again. A few weeks after my surgery I asked to speak at the dojo. I actually prepared a short speech comparing Aikido’s concept of ukemi (receiving a technique, “getting beat up”) to the trials of Buzz Lightyear in the movie Toy Story. Fortunately, I scrapped the maudlin self-tribute and spoke, as they say, “from the heart”.

Then in late summer I was invited by a fellow aikidoka and professional photographer to appear in group and solo portraits at the dojo. I’ve got one hung in my office now, of me sitting in seiza (on my heels) in front of portraits of O Sensei and Kanai Sensei.(4) My posture was upright, my face attentive: not a bad way to be remembered in death, perhaps joining a couple of the other portraits at the dojo of those who have died. Indeed, I would consider it a great honor. (Perhaps downsize it to a 4-by-6).

We’re like a family, more so because it’s run by folks with full-time jobs elsewhere, people who showed up for their first class long ago (decades, for some) in crisp white uniforms to try to learn this art. I haven’t always been the best student. (I remembered to bring a check today for March dues but forgot to leave it there). But I’ll always remember the feeling of being welcomed (after sticking with it for a while) and the humble quality of our decorum: “if you bow to the universe, it bows back”.(5)

On the subject of gettin’ done, there’s a long list of things I’ve left undone. We moved into our newly renovated house in 2006 and still don’t have baseboard in most of our rooms. I’ve had a stack of 1-by-6 pine sitting down in the basement for almost two of those years, waiting for a hammer and a few finish nails and a few hours of labor. Many boxes are waiting in the attic to be unpacked from the move. Shall they, sooner or later, join the steady flow of the dead’s unwanted leavings?

I might try my old friend Jack Hansen’s trick of selling off bits of the estate while still alive. Back in 2000 I read a newspaper article about Jack and Lillian, an elderly childless couple in Andover, Mass. who were struggling to keep warm in winter. I was a young carpenter and collector of end cuts(6) and I wanted to help. I brought them bags of wood(7) to burn and we struck up a friendship. One day Jack invited me to tour his basement, where he managed to sell me an old grinder and some antique hand tools. He died about a year later.

When it comes to my final days, I won’t be worrying about baseboard or a few hundred bucks. It’s hard to say what unfinished business will harry my limping mind: old friends lost, adventures unrealized, endearments unspoken. Or baseboard. Who knows? Something tells me I’ll go down dreaming of my own basement tomb, the smell of fresh-cut spruce, and the weight of a hammer in my hand.

NOTES:

  1. The subject is considered active rather than passive. That is, he gets himself done, finishes, or achieves doneness, rather than getting done by something or someone. I have no other source for this information than my own experience. ↩
  2. There are some amusing stories out there of veteran carpenters who finally wore out their tool belt (and/or the “sacks” that hang from them). Faced with the prospect of wearing a new tool belt, they’ve been known to run over the new gear repeatedly in an attempt to soften it up, or, more likely, just make it look worn. ↩
  3. This is not a Mainerism or a Yankeeism as far as I know. I have heard it most often in the context of sports. A team that has been eliminated from play-off contention is thought to be more likely to demonstrate a half-hearted effort. They didn’t show up. They mailed it in. ↩
  4. O Sensei (“Great Teacher”, born Morihei Ueshiba in 1883) was the founder of Aikido. The late Kanai Sensei was his student and one of three practitioners to introduce Aikido to the United States in the 1960s. He settled in the Boston area and taught there, but regularly visited the fledgeling Portland dojo. ↩
  5. This is part of a quote attributed to O Sensei, the founder of Aikido. ↩
  6. End cuts are short pieces of leftover lumber. I used them for grilling hot dogs. ↩
  7. Framing lumber (typically spruce, pine or fir) burns readily but it’s not good firewood. It’s too pitchy and won’t last. I supposed it was better than nothing. ↩

It’s My Birthday

Posted by on February 9, 2012 23 comments

Counting the Days

Today is my birthday.

I am 37 years of age, almost exactly. My birth certificate lists 3:52 PM as my time of birth.

That’s 13,514 days, 444 months (if you join the first and current months), about 325,000 hours, almost 20 million minutes, and more than a billion seconds: back around again to a season of penetrating chill, stark sun and shadow, ever-barren trees and oppressive boredom. If my old life had continued, I’d be sizing up my fourth decade, likely with disappointment.

Today is Thursday. I went to work this morning, as expected, though I felt ill. I finished the fifth day of Temodar on Tuesday, but its effects lingered. I felt fragile and disoriented, with a thin film of nausea sealing my appetite.

I planned to wrap up and go home early, but as I gauged my state of being I realized I felt better: stable and more alert. The fog lifted. I sipped my coffee and stayed.

I remembered a similar course of events occurring a year ago, while my brain tumor was growing, unknown to me. In the mid-afternoon I began to feel ill. It was not an “I need more coffee” kind of fatigue, but a penetrating malaise. My bouts with the flu had started this way. I expected aches and pains to follow, and resolved to leave early (spoiling my strictly regimented work schedule). By the time I finished writing an explanation to my boss, I felt better. I felt strangely better, as if I had never been ill. The ill feeling had simply vanished. I worked the remainder of the day.

Deja vu all over again? It’s hard to separate the effects of the treatment (Temodar) from the effects of the illness (brain cancer). Perhaps in the far future we’ll score this state of medicine as barely less barbaric than mercury tonic and bloodletting.

I’m more alert now to the tingling in my right foot — which still hasn’t worsened since it almost completely healed post-surgery — and the other familiar markers: trouble with balance, poor peripheral vision on the left, the failure of my touch-typing instinct, and brief but painful headaches when standing up.

So far, so good. But it’s still only February, and it didn’t take long for my life to fall apart last year as spring unfolded.

I ordered two windsurfing sails today, marked down nicely: a 6.0 meter and a 9.5 meter to complement my 7.5 and handle a broad range of wind conditions. Of course, the windsurfing season is yet three or four months away. The glorious thrill of sailing the bay is hard to ignore, though. I can pack my gear and roll it down to the landing and be on the water in minutes, fiercely alive, cozy as a seal in 7 mm of neoprene, taming wind and churning a bubbling wake and going away, away, away, a speck in the vast blue field.

I considered asking the salesman (a soft-spoken guy at a family sporting goods store) to hold my order for a week, until I get the results of my next MRI. How can I explain it?

If this MRI is bad news then I’ll probably be down or dead for the summer, so…

I didn’t have the nerve. I didn’t want to admit I thought it was possible.

I hung up the phone and joined my wife, son, sister and brother-in-law in the kitchen, where they sang Happy Birthday before a candlelit cake. For the first time in many, many years, I was delighted to welcome a new year of life. The specter of failure broke down into harmless bits of never and floated away. Someone said “Make a wish!” and I leaned in and thought “One more year!” and blew out the candles, and smiled.

My Job

Posted by on January 25, 2012 10 comments

I’m back to work this month, part-time, at Portland WebWorks. I had to quit first, then return as an independent contractor. I receive no benefits, as that requires full-time employment, but I can work eight to 10 hours per week and earn a decent hourly wage.

I was rusty, after seven months away from software development. But I’m recovering my skills and resuming the motions, like riding a bike. I feel like I’m earning my pay, and that feels good.

I’d like to ramp up to “half-time”. The full 40 seems a punishing regimen. I remember, in the first few moments after the discovery of my “mass” (before it was promoted to a tumor), reasoning “I’m retired now.” Even then I felt a touch of relief within the horror. Terminally ill, I ought to enjoy my own little “make-a-wish” while I can, no?

On Jan. 18, I applied for Social Security benefits. I’d like to say I disapproved and halted the process with a feisty “fuck off, I’m not disabled”. But I felt pressured to seek all available benefits, for the sake of my family. Despite my pride and sense of fairness, the instinct to “get mine” is overwhelming when I consider my family — as if I have no right to deny them this opportunity. Bring home the meat, daddy dog.

Susan at Genex Services out of Wayne, PA helped me complete the application online. (Their motto is “solving the cost/care equation”).

During the last 14 months, unable to work because of illnesses, injuries or conditions that have lasted or are expected to last at least 12 months or can be expected to result in death: Yes

True, by any reasonable measure.

Worked or will work for an employer in 2012: No.

True, technically.

Self-employed in 2012: Yes.
2012 self-employment type of business: Software development
2012 self-employment net income greater than $400: Yes

True!

Total of all wages and tips including net income from self-employment in 2012: $12,960

That’s a quick back-of-the-envelope projection. It could easily be more, but doesn’t account for expenses.

Illnesses, injuries, conditions that limit ability to work: Gliosarcoma
Illnesses, injuries, conditions related to work: No

True, true.

Now able to work: No

I feel like Bill Clinton. It depends on the meaning of the terms “now”, “able” and “work”. Susan tried to explain why, technically, “No” is the right answer. It has something to do with earning at least $1,000 per month over a period of several consecutive months. It has a lot to do with Genex’s mission to relieve UNUM (Portland WebWorks’ disability insurer) of its own obligations. What is the right answer? I could be dead in six months, or I could take home 30 grand. Who knows?

My little brother Ben is in Afghanistan.

He’s a second lieutenant in the 182nd Engineer Company of the Massachusetts National Guard. He just deployed this month to a base near Kandahar.

I saw him commissioned in a ceremony at Faneuil Hall in 2010, wearing his crisp blue uniform. (He skipped his own college graduation to be there). I saw him deployed in a ceremony at a packed, dingy auditorium in Newburyport, in November, wearing his faded camouflage. He was calm, even light-hearted, unburdened by nostalgia. They traveled to Texas and New Mexico for training, then overseas.

They’re combat engineers, or “sappers”, inventors of the fortified siege, and trench warfare. They blow up stuff. Now in Afghanistan they’re seeking and destroying the Taliban’s hidden bombs (“IEDs”, improvised explosive devices).

Ben was born in 1988, when I was 13. It seemed the world and I were growing up together: glasnost, the falling Wall, the “peace dividend”. Wars in Panama and Iraq were quick and clean.

When terrorists struck American soil in 2001, Ben was 13. He grew up in the shadow of the terrorist threat: Vigilance, steely resolve and duty to country. We’ve been fighting in Afghanistan ever since.

We are the products of our times, more than of our genes. Perhaps that’s why, though I appreciate Ben’s many qualities, I don’t understand him. He’s in Afghanistan, doing his job (he’s far from preachy about his purposes) while I’m quoting Ben Franklin on “liberty over safety”, quite safely at home. (1)

When I compared my illness to a war, the diagnosis of terminal cancer was still very fresh. I savored each day desperately. Now seven months later, the mortal threat is abstract. The growing normalcy of my new life obscures it, and I no longer cling to the passing moments. I know I can’t hold them.

“Ours is the courage, the resolve, to witness the events that carry us into history.” (2) I’m still here, still writing, still pondering my supposedly premature death. Its “nobility” seems to have been overstated. I’m just doing my job.

I am now in the IV treatment room at MCCM (3) in Scarborough with a tiny catheter in my left arm, typing on the iPad with my right hand.

I’m thinking of the scene in 50/50 where the guy with cancer is getting his chemotherapy. This is not like that. We are not passing joints. Actually —

“Date of birth?”

“February ninth, nineteen seventy-five.” (4)

Avastin dripping now, clear and cool.

Actually, I rarely see the same patient twice in this treatment room. There are usually ten or fifteen people lounging in these grey vinyl recliners, plugged into a drip. (I’m in chair 7 today). Of course, the room is always quietly buzzing with a half-dozen nurses, nothing at all like the “private club” atmosphere in the movie.

I am relatively young for a cancer patient. But Anna Kendrick has no chance with me. Sorry, Anna, I’m taken!

Proof the recent tripling of my Paxil dose has made me “happy”: I am regularly appending exclamation points to my texts.

Hello!

How can I describe the feeling? Joy? Satisfaction? No, none of these. It’s a feeling of anticipation. Where before I might have worn the latest New Yorker like a blanket, reading for hours, silently involved, yet inevitably disgusted — now it’s “ON TO THE NEXT THING!” Why does everything have to be so damn interesting all of a sudden?

I’m only half kidding.

Years of depression, and anti-depressent medications of middling effectiveness, gave me a realistic (pessimistic, really) outlook and a reserved (er, socially insecure) personality. It was obvious to me that happiness was delusional. (5)

Why wouldn’t I want to be happy? Something’s not right about it. It cloys like a friendly dog. “Life is Good” apparel, with its care-free smiley doodle, always puzzled and bothered me. (6) Life is good? What!? I regarded these folks as misled. Then today I said it. I actually said (to myself) “life is good.”

Shoes by Nike. Wristwatch by Timex. Mood by GlaxoSmithKline. (7)

I have allowed myself to pretend I don’t have cancer. I don’t deny having cancer, nor skip treatments. I’m getting on with life. The burden of overwhelming odds shall be dismissed while I’m relatively healthy. That has been my strategy for many months.

Sometimes I doubt the wisdom of ignoring my inseverable bond to this illness. I walk the dog, then the dog walks me. Will I be ready?

Recently I heard a fellow patient’s brain tumor was found to be growing again. It scared me. Is it a call to action? Shall I make a project of preempting my regret? What will I wish I had done? I’ve written here that I would welcome death. (8) Yet life can have a way of spinning hope from thin air. Is that resolve or self-deception?

Depression can be a terrible, paralyzing illness. Might a comfort be rendered from the dark mood, when darkness falls?

NOTES:

  1. “They who can give up essential liberty to obtain a little temporary safety, deserve neither liberty nor safety.” Attributed to Benjamin Franklin. ↩
  2. My June 8, 2011 post “Courage” ↩
  3. Maine Center for Cancer Medicine ↩
  4. This is a short piece of security theater we perform, as a matter of policy, at any and every visit to a MaineHealth facility. ↩
  5. There’s a poster at the Community Counseling Center in Portland that offers ridiculously simple but refreshing advice for living one’s life, in the form of a flow chart. It asks “Are you happy?” and then, if your answer is “No”, “Do you want to be happy?” That is the question for me. (The result of “No”, also the result of “Are you happy?” -> “Yes”, is “Keep doing what you’re doing.”) ↩
  6. http://www.lifeisgood.com ↩
  7. GlaxoSmithKline is the current name of the company that developed Paxil, which is generically known as Paroxetine. ↩
  8. My Nov. 19, 2011 post “Decline” ↩

Martino

Posted by on December 17, 2011 6 comments

I know one other guy with brain cancer. Martino Sclavi.

Martino lives in Rome. When news of my diagnosis reached a mutual friend, he offered to share his war stories. We emailed a few times. He was in New York earlier this month, so I used some miles to fly down. We met at my in-laws’ place, then took a walk and got some brunch.

I remember his first email, May 14:

What can I say to someone that is just beginning what I began only 3 months ago? I am doing well. The whole thing ain’t as tragic as one would expect.

I, too, was feeling upbeat. The shock and trauma of the previous weeks was washed away by a rush of steroids. I began to look back, to seize and savor the memories of survival.

I replied May 17:

Please allow me to share with you some of the details of my diagnosis and treatment, and to tell you a little bit about who I am.

I called it “the first chapter of my story”. A week later, it became the basis of this blog.

Martino more than matched it May 18:

I was fortunate to have forgotten or “erased” most of my “Chapter 1″. All I know is that I was in L.A. working on a film script and I began having some pretty terrible head-aches which would not go away with the usual over-the-counter. After the presentation of my work I asked a friend to bring me to a doctor… By the time we came to the emergency room of the hospital (from the reports of others) I was very confused.

Considering it was L.A., the emergency room staff assumed that I was some kind of drug case and just put me on a bed to sleep it off. My friend went home assuming the same. Fortunately, a nurse realized that there was something else going on and picked up my phone, calling the last number dialed. All of this and what happened in the next 2 days I have heard from others because I have absolutely no recollection of it. I have been told that my friends arrived to the hospital where I was still in a confused state and made sure that I was taken care of. The surgeon was a good guy and the fact that my friend (who answered the nurse’s call on that fatal (1) night) is a very well known actor allowed some of the financial worry of the hospital to go by in the emergency.

I woke up and found my wife and mother and sister in the hospital. They had been flown in from Italy. I had little or no clue what had happened and still now it all feels a bit like a dream.(2)

I wrote June 9:

I just wanted to say “hi” and see how you’re feeling. I started chemotherapy and radiation therapy yesterday. I was pretty nervous about having my head strapped down to the table. They made a special mask for me that connects to the table and holds my head still. It looks pretty creepy. Can I send you a picture of it? You might be interested.

I didn’t know then, as I do now, that Martino’s an easy-going kind of guy. He responded…

Do you mean this kind of “silence of the lambs” kind of mask ;-)

… with this image:

Martino Sclavi

In August he wrote with news of a second brain surgery, this time in Rome. (Some of his original tumor remained after the first surgery, “done in emergency circumstances”). His doctors cut it out while he was awake. Apparently it was a showcase event, attended by many eager young doctors and an attractive “psycho-neurologist” who had him counting to 20 in various languages. It was a stunning success, but left him unable to read (though he can still write).

So, anyway, brunch. It was so crowded in the restaurant they had to pull our table out of the row to seat me against the wall, then push it back. Martino ignored the menu and requested standard breakfast fare. He had demonstrated his deficiency by reading the advertising in a shop window, on our way there. He can read, but his scope is limited to one letter at a time. It’s slow, tiring, and by the time he reaches the end of a word he might forget how it started. But his speech is articulate.

After brunch we strolled in the park. When our conversation turned to prognoses we discovered a startling contrast. None of Martino’s doctors had cited a prognosis in concrete time. He claimed their sole interest in conversation was his current health and treatment. I told him about hearing my neurosurgeon’s prognosis of 15 months only a few days after my surgery. He vigorously disapproved of that approach. He seemed to expect modern medicine to answer every challenge.

I came away from our conference wondering about how best to face the future. Martino fared worse than me in surgery but seems more relaxed and hopeful. I want to know the numbers, grim as they are. But I also feel my future compressed by doubt, one bad MRI from despairing. Shouldn’t I hedge my bets and stem those grand schemes that now belong to younger men? What good grows in this tall shadow of recurrence?

NOTES:

  1. I believe he means “fateful”, though I’m reminded of wondering, somewhat playfully, whether I might have actually died in surgery and am now experiencing a sort of dream. Somewhere else in the multiverse? ↩
  2. I have edited Martino’s words (lightly, I think), mostly for punctuation and spelling. ↩

Decline

Posted by on November 19, 2011 21 comments

Wednesday, Nov. 16

He was never the same again.

The end of Chapter 1 of the story of a man’s decline.

There are peaks and valleys yet for me, but I fear I may never return to late summer’s heights of adventure. I’ve been in the grip of a dogged cough for nearly three weeks now, and the islands of Casco Bay are guarded by a deep blue chill. I did go snorkeling yesterday at East End Beach, if only to prove it’s too cold for a 7mm wetsuit.

Today was the last of five days of Temodar, and again it feels like poison. I’m terribly constipated, out of tune, hot and cold, dull, disinterested. I have a mild but persistent headache. Is my tumor coming back? If next month’s MRI shows progression, I might never taste the sea again.

I struggle with the question of how to decline and die. I study my death. I will sleep, and sleep, and sleep, more and more and more until I stop waking up. Death rattle. Done. In a way, it’s a gentle, easy cancer death. (1)

But I’m still scared, and sob some. I realize I will never succeed in raising my son. I’ll never pour enough love into his 7-year-old heart. I have to let that go. (2)

Thursday, Nov. 17

Today I wanted to die. Something inside me was moaning and shivering and rattling chains like a Jacob Marley.

I stumbled through a NyQuil hangover to a morning appointment with a neuropsychologist. I didn’t know what to expect and didn’t bother wondering. We talked about my illness and my depression. On a scale of one to 10, with 10 being “very happy”, I rated myself a two.

Two? That surprised me.

She graded my memory, spatial and verbal skills with fairly simple tests. The math test proved tedious and I didn’t finish it in time. It’s only a “baseline” test, anyway, if ever I want to gauge how far I’ve fallen from here.

Friday, Nov. 18

I’m not feeling well. Repeat 1,000 times.

Shall I meet with death? Let’s do it, I say. But this is not courage. Make peace first, and that is not lightly done.

Mine is not a soldier’s courage in the face of gruesome risk. It is the courage to face a slow decline. It is the courage to embrace a truncated life. (3)

And to whom do I owe this? Is there a purer person behind my depression, ready to embrace this slumping soul and guide it to nobler conceits?

Make peace.

Saturday, Nov. 19

It’s amazing what a few good shits will do for morale. I’ve returned, upright, to my full-time job of being a cancer patient, not so desperate nor nearly healed.

As the late art critic and glioma sufferer Tom Lubbock wrote:

It’s not possible to get any distance from my project: being alive. Objectively, from the outside you might say, my life is terrible, unbelievable. And it’s true, I hate this. I hate the way I am at the moment. But there is no objective view, I am here, in it, and there is nothing else, and this fact brings with it many things that make it of course easier. And beyond that there are many other things to think about. (4)

NOTES:

  1. Symptom Time Line from BrainHospice.com ↩
  2. As a matter of principle, I’m not giving up on the possibility, however remote, that I will live to see him reach adulthood. But it’s very unlikely. ↩
  3. Courage ↩
  4. Tom Lubbock: a memoir of living with a brain tumour from The Guardian ↩

David Hallowell

Posted by on November 10, 2011 5 comments

It’s easy to forget that we’re not just customers of our doctors. We are also the substance of their lessons and discoveries. Yet even in the course of demonstrating a medical triumph with our own bodies, some do sacrifice: members of the control group in clinical trials, like David Hallowell of Belgrade. (1)

David’s gliosarcoma was diagnosed in November, 2010. Soon after, he joined a clinical trial of the chemotherapy drug Avastin. Only months before my own tumor was discovered, his participation helped prove that Avastin safely fights brain tumors. Unfortunately, that proof was delivered with the control group’s ill fortune in comparison to those who received the drug. David’s tumor recurred and he needed a second surgery in the spring before finally starting Avastin treatments.

As a result of studies like his, oncologists began to use Avastin earlier in the process of the disease. I was able to start treatments within two months of my diagnosis.

I never met David, but we shared an oncologist. David’s wife Judy contacted me in June after reading this blog. I emailed her this morning to catch up, and she replied with news of David’s passing in August at the age of 56.

She wrote: “In my heart I do think if he had received the Avastin with his standard treatment right off instead of the placebo he would be here with me today fighting the fight. David had said he just hoped that all his clinical studies would help someone else.”

It’s a brutal and tenacious type of cancer. The common treatments — surgery, radiation, Temodar — add only months to the average prognosis. But until there’s a breakthrough, those months are what we’re living for, or living in, right now. Perhaps early Avastin treatments will add a few more months to my own life, for which I have David and many like him to thank. May I earn the chance to do the same for others, if fate so grants.

David’s obituary in the Kennebec Journal prescribes this opportunity beautifully: “In honor of David’s memory, I ask folks to pay it forward with a random act of kindness, smile up to the heavens with a wink and say, ‘This one’s for you, David.’” (2)

Rest In Peace
David Lee Hallowell
May 11, 1955 – Aug. 17, 2011

NOTES:

  1. Of course, we don’t know ahead of time that the treatment group will fare better than the control group. The treatment itself may prove detrimental (e.g. toxic) or have no significant benefit. Thus the critical role of the control group in assessing efficacy. ↩
  2. Originally published in the Aug. 18, 2011 edition of the Kennebec Journal, and accessed online Nov. 10, 2011. ↩

Marinol

Posted by on October 19, 2011 6 comments

Nausea. It feels like someone reached down my throat, grabbed my stomach and pulled it out through my mouth.

The Temodar is getting to me, finally. The first three of five straight days of 340 mg are fine, then the nausea hits on the fourth and lingers for a few extra days. Food seems absolutely repulsive. Any strong smell is like a poison gas.

Over the summer I took lower doses of Temodar without the nausea reliever Zofran. When the dose was upped to 250 mg, I learned (the hard way) to take a Zofran ahead of time. I’m taking it around the clock now, but still in the grip of this dreary, ill feeling.

Enter Marinol. My oncologist prescribed it for me last week to back up the Zofran. One of his assistants, in preparing the prescription, counseled me earnestly not to expect a “high”. Like marijuana, Marinol’s active ingredient is THC. (1) Rather than risk my health inhaling some pungent plant smoke under cover of darkness, I would ingest a medically necessary, socially acceptable and completely legal pink pill. (2)

It arrived at my local pharmacy Monday and my wife picked it up. That was day four of the Temodar. I felt unsettled and my appetite was nil, so I went to the fridge and took one. And guess what? After a few hours, I was high.

It’d been years since I had that kind of experience. My mind was swept up in a garish parade of thoughts and meta-thoughts, a peculiar but recognizable sensation. I felt compelled to write, and laughed at myself, suspecting my revelations were the same worn offerings I’d ignored when sober.

All in all, I prefer my normal frame of mind, though in contrast it seems inert and bundled. Fortunately, my appetite came back.

Tuesday morning I was not queasy, but had a headache. I rallied for an outing on the sailboard, took a Zofran while sitting on the board out in Casco Bay, then swallowed the last of the Temodar when I got back to the landing. The nasty feeling crept up again in the evening, though I was able to eat and avoided Marinol. I woke up twice during the night and beat back the nausea with will power.

But this morning was just wrong. I pushed myself through each tiny step of a mundane morning ritual and got my son to school. Later I napped and was able to stomach a pear.

At this point, I’m not sure which I prefer: sober nausea or stoned hunger.

NOTES:

  1. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000403/

    This article explains the medicinal use of dronabinol (brand name: Marinol). Some enlightening excerpts:

    Possible side effects include: “feeling like you are outside of your body, ‘high’ or elevated mood, hallucinations (seeing things or hearing voices that do not exist), sleepiness, strange or unusual thoughts”.

    Symptoms of overdose may include: “inappropriate happiness, sharper senses than usual, changed awareness of time, red eyes”.

    Would someone please let me know when it’s appropriate to be happy? ↩

  2. http://www.justice.gov/dea/ongoing/marinol.html

    This is a (rather snarky) illumination of the differences between Marinol and all other (illegal) THC vectors. It opens with this choice retort: “Medical marijuana already exists. It’s called Marinol.”

    I appreciate Marinol’s convenience and precise dosing. The cost, however, is ridiculous. On Oct. 20, 2011, Drugstore.com listed the price of 60 capsules of 2.5mg Marinol as $441.97. The illegal “bud” form of the drug is a fraction of that cost. (I would guess 5 to 10 percent for a similar dose). ↩

Lulu

Posted by on October 4, 2011 2 comments

I killed my cat yesterday. Euthanized, whatever. He was sick.

Requiescat in pace, Lulu. 1999-2011.

He lost a lot of weight. My wife noted this with concern, but I was not impressed, for he retained his monotonous, demanding yowl. Who’s to be alarmed by a lazy old cat?

He left squirts of diarrhea in my shoes. That got my attention. I was angry at first, then surprised and frightened by his weakness. I asked my sister to bring us to the vet.

After a few moments of examination, the vet declared Lulu’s kidneys irretrievably failed. Without treatment he would slowly wither. With twice-daily hydration drips he would “go on for a while”. Or we could end it now.

Lulu groaned and wriggled meekly, a shadow of the hissing, bucking tomcat of previous visits.

I wanted time for us to say goodbye. I wanted my seven-year-old son to understand Lulu’s illness and death. Before it’s my turn to die. And I wanted to give Lulu a few days of treatment to help him feel better. Before we killed him.

So we brought him home with a liter bag of fluids, drip line and ten needles. I treated him morning and night, piercing the skin between his shoulders and draining 100 ml per treatment of “lactated ringers” from the elevated bag. He walked away bowlegged, with the fluid pooling in his legs and belly.

His condition improved and we savored the time. We stroked his fur, tolerated his uremic odor and forgave his now regular incontinence. For five days. Then the vet (this time, a lady who makes house calls) came to put him down. We would not continue the hydration treatments indefinitely.

He sat in my lap as she injected the anesthesia. He seemed woozy and turned his head as if surprised, then slumped. Time was expiring. In seconds it would be too late to stop, too late to grant my ward the care I expected for myself. And then it was. She injected a medicine to stop his heart and then checked for a heartbeat. There was none. He was dead. Days (or was it years?) of anguish yielded to the irreversible truth, and I sobbed.

Back in ’99, before we were married, my wife and I answered an ad in Uncle Henry’s for free kittens. They were giving away the females and we took two: a black-and-white tuxedo we named Otis (after their place of birth, Otisfield), and Lulu, a sleek silver-hair. We took them back to my father’s house in New Gloucester, where we were visiting, then back home to Lawrence, Mass. and then, a few days later, to the vet, who gently disabused us of our sisterhood with the revelation of Lulu’s distinctly male genitalia. Otis had a boy’s name by design, Lulu a girl’s by accident.

They were joined a year later by an orphaned, flea-bitten mackerel tabby kitten we named Henry. For eleven years the threesome prowled, seeking plunder in youth and then, with age, just dinner and a warm lap. Otis grew fat, Henry selfish, and Lulu paced a middle ground, apparently the only cat who could get along with the other two. He often groomed them (especially Henry) and was fond of licking us as well.

We often thought of Lulu as “not the sharpest knife in the drawer”, given his tendency to get stuck in closets or on roofs or anywhere the route of escape was not readily visible. His breath was terrible, his claws indiscriminate, and his potty training incomplete. He regularly vomited on the furniture. He was also affectionate, and delightfully strange. When he trotted, his loose belly fur would wag comically.

After the vet left, and my wife and I stopped crying, I wrapped Lulu’s body in a shroud of old tee shirts tied up with old socks. His eyes were rolled back. His head swung. I held him in my arms as my wife drove us back to my father’s house in New Gloucester, almost to the very beginning of our journey together, now with our son along. We buried Lulu next to Mittens and Cosmo (my father’s cats) in the tall grass down by Woodman Road, and marked his grave with a plain stone which is less than he deserves. We spoke a few awkward words, sang Michael Row Your Boat Ashore (terribly) and swatted mosquitos.

I don’t find myself regretting our shortage of poignance. Why pretend that any volume of stirring words can meet his peculiar bearing, his flat whining, his maddening habits, or the pleasures and pains of the time we might have had?

Lulu

Lulu at three years

Summer’s Over

Posted by on September 24, 2011 4 comments

Summer’s over, technically. It seemed a vast slow-ripening season of wonder and recovery, stretching out from May to as far as the eye could see. Not till August did I feel it aging, and grab it with both hands.

We were out at the lake, (1) visiting friends. I felt hemmed in, resisting and then relenting to the urge to swim away into oblivion. The sounds of shore faded, the deep darkened, and I was alone with the sky.

I swam for about three hours. I thought “I could die out here”, but I knew I wouldn’t. Emotional tension was erased by exertion and then hunger. I returned cured, ate and ached well.

For weeks I yearned to be in or on the water, swimming, then snorkeling, then kayaking, then windsurfing — pushing myself into places that pushed back. (2) I paddled around Peaks Island in the wake of a hurricane, fighting five-foot seas and better advice. (3). I climbed on and fell off the sailboard, again and again, and drifted, until I was exhausted. Until I got it, and got home, because there was no other choice. (4)

And I dropped about $5K for these late-summer flings: a mid-life crisis and retirement rolled into one, for a weekend warrior with no week. Six months ago I was too depressed — or stuck in my routine, or bound by expired fantasies — to consider such adventures. Are they more than a distraction now?

Today I’m jolted and unbalanced like a radio out of tune — queasy after five days of 340 mg Temodar, and likely missing a dose or two of anti-depressants after drowning my iPhone and its daily alarms in the corrosive salt water of Casco Bay.

My Windsurfing Lesson

Learning to windsurf at Windsurfing Maine on Androscoggin Lake. (Ian Barclay photo)

NOTES:

  1. The north end of Damariscotta Lake. ↩
  2. I also sailed a dinghy on the deliciously lonely Tunk Lake, by myself one afternoon for several hours. It scratched an old sailing itch and finally proved a great number of nautical fantasies feasible. I felt at the time, and no less so now, “this is as good as it gets”. ↩
  3. A “small craft advisory” was in effect as Hurricane Katia moved up the coast. ↩
  4. A “sailboard” is what one uses for “windsurfing”. I like the generic terminology since “Windsurf” was once a brand name, and because I’d rather sail than surf. And “this is my sailboard” sounds better than “this is my board, which looks like a surfboard but is actually for windsurfing, er, sailing, in my case”. ↩