Tuesday, April 23, 2013

Final journal entry -- Wednesday: May 9, 2012

I returned to work yesterday for the first time in more than four months. I spent only five hours in the office and did not get much accomplished, but it felt good to be back. Lots of folks stopped by and told me how glad they were to see me, which was heartening.

Today? I'm home, exhausted after making the trip down the hill for radiation. It's going to take a few more weeks before I'm ready for something approximating a normal schedule.

The great thing is I have a couple of interesting stories for which I've been assigned, which provided some motivation for getting stronger.

I pushed myself Saturday by watching a high school baseball game, hitting a small bucket of golf balls and then helping coach a 14U game that evening. That proved far too much and it took two days to recover.

My hope is to head to work tomorrow after radiation. We’ll see. I don’t have any choice but to take everything one day at a time.

Wednesday, April 17, 2013

Monday: May 7, 2012

Today marked my fifth day of whole brain radiation, leaving me 10 to go before I'm done with cancer treatment.
Fatigue is supposed to be one of the primary side effects of whole brain radiation, but I can't distinguish it from the fatigue I felt before this phase of treatment began. Add it all up and I'm just freaking tired.

There also have been headaches, which surprisingly surprised the doctors. I figured headaches would be a given since radiation causes the brain to swell.
The treatment itself goes quickly. You lie down with the back of your head resting on a foam mold. A technician places the mesh mask over your face and straps it down tightly – and I do mean tightly. I can understand why some people need to be sedated before treatment.
I'm fine with the mask. I don't have to wear it long. The linear accelerator is on for less than 20 seconds as it treats one half of my brain and then swings around to blast the other half. My total time on the table is around five minutes.

You feel nothing during treatment, but there is an unpleasant odor when the accelerator is shooting out its moon beams. I'm not sure if the smell is just part of the machine or whether it's the radiation interacting with my skull, something I'd prefer not to consider.

Whole brain radiation can cause longer-term cognitive difficulties like memory loss. The brain is supposed to heal from the damage that radiation inflicts, but it can take months.

Chemotherapy has already created some of its promised cognitive problems and I'm afraid the whole brain radiation is making it worse. Writing is difficult. So is reading. I just can't seem to focus on much of anything.
I've never claimed to be a genius, but I have possessed a certain facility with language that seems to have evaporated. It's depressing. I'm supposed to go back to work soon and I'm uncertain about what I'll be able to do.
I knew smoking cigarettes was stupid, but I never realized how stupid they would make me.

Monday, April 15, 2013

Wednesday: May 2, 2012

I guess I was not at my best yesterday morning when I arrived at Kaiser for my appointment with Dr. Verma, the oncologist.

“You look terrible,” his receptionist told me as she recorded my weight and blood pressure.

It was a blunt but undoubtedly accurate assessment of my condition inside and out. I'd only slept an hour, having spent the night watching a collage of forgettable television as sleep refused to take root.

Dr. Verma was more tactful. “Are you okay? You look so serious."

He wanted to know if I had celebrated the CAT scan results from last week that officially showed I no longer have cancer. I said I had not. It never occurred to me to celebrate.

When Dr. Verma asked why not, I said, “I'm scared.”

He pulled up the CAT scan from last week and compared it with the one I had Friday, Jan. 13. A white mass is plainly visible in the January scan. It’s no longer there in the latest scan. Having been  poisoned, raygunned and prayed over by plenty of folks I don't even know, a growing and deadly tumor has turned into a wondrously useless bit of scar tissue.

“Life is too ephemeral,” Verma said. “If you can find a reason to celebrate, you should.”

He had a point, but I'm not ready. I'm not sure when that time will come. Maybe in a couple of years, but not now. Nurse Robin’s words still haunt me.

“The problem is, it always comes back.”

We know it doesn't always come back. The odds were not in my favor, but I’m the outlier, dammit.

Dr. Verma said my chances of survival increase mightily if I remain cancer free during the next
year and a half.  After three years, I'm almost home free. Five years? It’s likely I’ll die of something  other than lung cancer.

Like a child seeking approval, I asked a question for which I already knew the answer. I needed to hear it anyway.

“Not everyone responds this well to treatment?”  I asked. Dr. Verma assured me they do not.

Maybe in three years I'll celebrate. For now, the plan is to live well as I can. I’m hoping the fear will dissipate in the weeks and months to come and normal will indeed become just that, normal.

Thursday, April 11, 2013

A story that has nothing to do with cancer

One of the few joys of growing up in a small, hick town was my willingness to leave it in a hurry and and never look back.

There was no longing, no saccharine sentimentality, no yearning for halcyon days forever lost. Nine days after someone handed me my diploma in 1977 on the scruffy turf of the high school football field I eagerly flew to Fort Knox, Kentucky, to begin basic training and a life as I know it today.

The Army served its purpose well, exposing me to places, people and things that did not exist in that close-minded Midwestern backwater of my childhood. As undisciplined as my life had been to that point, military life suited me surprisingly well.

It helped that my job did not involve toting guns and living in tents. I was a finance specialist who worked in offices and almost always had weekends off. My ability to do my assigned work and manipulate a system ripe for exploitation made my four years of service relatively easy.

Fort Hood, Texas, and its miles of desolate scrub brush became my first duty station. Deborah, a second lieutenant whom a 19-year-old enlisted man literally had no legal right to date, became my first grown-up love. Her return to California after leaving the Army became my first, but hardly last, grown-up heartbreak.

One of the goals of my four years' service was to travel overseas. While in Texas, I made regular calls to a woman in Washington asking to be sent to South Korea. Friends had regaled me with stories of the good life there for young, dumb Americans who cared not a whit that several hundred thousand angry North Koreans encamped just north of the 38th parallel ready to spill good old red-white-and-blue American blood.

Then one day the woman in Washington told me "No" for the umpteenth time but asked if I'd be interested in going to Turkey. Lacking a better option, I pondered this possibility for at least two seconds before telling her "Sure."

My sponsor, the guy I replaed in Turkey, sent information about the cultural do's and don'ts of life in the moderate Muslim world. Not long before my departure, a virtual travelogue was released in theaters -- "Midnight Express." A couple of buddies and I went to see it. I'm sure we were stoned. Afterward, they wondered if I'd lost my mind.

I left Texas in March 1979 and spent a few days in New York City before flying to Izmir, Turkey, a city of about a half-million people on the Aegean Sea. New York did not disappoint.

I accidentally (honestly!) went to my first strip club after attending my first Broadway show and got ripped off for the first time by a “B girl” who sold me extravagantly priced champagne for the honor of her company. She then took pity on a teen-aged rube and spent two days providing a more wholesome tour of Manhattan before I took a gypsy cab to JFK for my flight across the Atlantic.

I arrived in Turkey on my 20th birthday, a stranger in a strange land. My job in Izmir would be the lone caretaker of several hundred soldiers' pay, from the three-star general at NATO headquarters to the communications specialists huddled on mountain tops intercepting Soviet communications. Our offices took up one floor of a small office building. I shared a comfortable apartment with a couple of co-workers in an upscale Izmir neighborhood.

The Turkish government devalued the lira a few weeks after I arrived, essentially tripling the buying power of my $1,000 monthly salary. Despite the cautionary tale told in "Midnight Express," hashish was plentiful and cheap -- Charlie, the toothless office shoeshine man and errand runner, would deliver it surreptitiously to our desks in exchange for a carton of Marlboro 100s that cost $2 in the PX.
We paid our maids with bottles of Johnny Walker Red, sold old Penthouses at five times the cover price and black marketed Levis mailed from home for $50 a pair. Turkey proved profitable to a poor enlisted man willing to take a few minor chances.

My job required me to take periodic trips to Germany. On one of those flights home, I sat next to Semra, an attractive woman from Istanbul who had been studying accounting in Germany. We struck up a conversation that led to meetings in Izmir and Istanbul and, not long after, romance.

We spent time exploring the wonders of her hometown of Istanbul and soaking up sun at seaside resort towns along the Aegean coast. Discussions of marriage ensued. Her wealthy parents did not approve. But even shallow soul-searching made me realize it was neither the time nor the place.

Turkey proved a study in contrasts. Kemal Ataturk, the George Washington of modern-day Turkey, used his iron will to Westernize the country during the early part of the 20th Century. He changed the written language from Arabic to the Roman alphabet, banned the wearing of the fez and reached out to the West, despite an abiding mistrust of its motives.

Thus, Turkey was a mix of cosmopolitan Western sensibilities, ancient customs and abject poverty. The gap between rich and poor ran wide and deep. The hills surrounding Izmir were dotted with small, sparsely furnished but immaculately clean homes. The Turks impressed me greatly with how much the loved their children and how clean they kept their homes.

It was a country in search of a political identity. Factions of the extreme right and left battled each other and the government daily during my 15 months there, committing terrorist acts, including killing American military personnel, and forcing the Turkish generals to once again declare martial law and take control of the government in a bloodless coup.

A small international incident called the Iranian hostage crisis kept things interesting for a time.

Poverty showed its face everywhere. Ragged beggars, some lame, some blind, some clutching bedraggled and sad-eyed children, were common fixtures on the streets of Izmir. Islam requires its adherents to care for the unfortunate, but it defies the imagination how these wretched mendicants survived.

One of the lasting memories of Izmir came on a warm and cloudless Saturday morning. I had walked from my apartment to a section of the city where the PX and other military facilities were located.
As I approached the military post office, I was taken aback by the sight of something that appeared barely human.

A man, maybe in his late teens, maybe a little older, stood in the middle of the street. His clothes were torn and soiled; blackened toes peeked from his shoes; his hair was matted and filthy. He drooled and smelled of shit; his eyes were black and vacant. Bedlam could not have produced a more desperate case.

Any sense of pity toward this God-forsaken soul was overwhelmed by revulsion at the sight of him standing on the sidewalk pulling on his flaccid penis through the opening in his pants.

Then, in a moment that remains as vibrant today as it was 30 years ago, this disgusting cretin tipped back his head, opened his mouth and began to sing. Not some foreign-sounding gibberish, but deep, mournful American blues in a voice hauntingly beautiful and expressive.

How could this be? How could the most foul human being ever produce such wondrous sounds?
I have no idea what he sang, but those notes -- rich, clear and sonorous -- soared over the still streetscape for maybe half a minute in heart-rendering splendor before fading to silence.

Finished, he turned and ambled down the street. His accidental audience noiselessly followed suit, unsure of what they had just witnessed.

I had already lost much of the religion pounded into me during my youth. That tableau did not help. What kind of cruel joke had God played on this man? To give him a brain of mush and the voice of an angel?

Years later, I struggle to understand what I saw and heard that day. Years later, I wonder what happened to that voice.

Tuesday, April 9, 2013

Friday: April 27, 2012

I thought I had prepared myself emotionally no matter what the news might be.

Yet, when Dr. Greskovich walked into the examination room at the Clinic and told me the CT scan showed I'm cancer free, I cried for the first time in weeks.

Those tears were a blessing; It showed that I’m capable of an emotion other than gloom. I’m pretty good at fear, too. Anxiety over the possibilities of cancer’s swift return stalks me like a pack of ravenous hyenas.

My trip to the Clinic was to prepare for my next big adventure: 15 sessions of whole brain radiation. Small-cell lung cancer is quite comfortable nesting inside people’s brains, which means the doctors need to give all your gray matter a dose of moon beams just for kicks.

The preparation included the creation of a terrifying looking mask that will anchor my head to the table. Being rolled in and out of MRI machines the last few months has largely cured me of my claustrophobia, but I’ve heard stories of people who needed to be sedated each time they had to wear the radiation mask.
It’s made of a mesh-like, plastic material. The techs warmed it up and then molded it tightly to my face. The mask and (and your head) is then essentially bolted to the table. When that happens, it takes a few seconds to realize that you can actually breathe as the mask painfully presses against your face.
Strapped down, the techs asked me how I was doing. “I’m fine,” I told them.

After all I’ve been through, no one can hurt me anymore.

Afterward, Dr. Greskovich talked about the side effects of whole brain radiation, which I’d already researched. According to the pamphlet a nurse gave me, one of the primary side effects, fatigue may persist for months if not years.

For a man who can barely rise out of his recliner, that is not something you want to read. And a bonus side effect is hair loss, a moot point at the moment given that chemo took care of that. There's a little fuzz that has started to grow, but it will be gone soon.

Strangely, this new radiation routine might be a good thing. Perhaps it will lift me out of my incessant funk. I’m doing something again, even if it’s slightly unpleasant.

Let’s consider it a challenge. Get up in the morning and drive down the hill to endure some more unpleasant shit. Better than sitting on my ass feeling sorry for myself.

Monday, April 8, 2013

Thursday: April 26, 2012

Fatigue consumes me. I slept for eight hours last night, woke up, ate breakfast, and promptly fell back asleep.

I reawakened just in time to drink two large bottles of yummy barium sulfate, drive a mile to Kaiser where I received a CT scan. I was home an hour later and immediately fell asleep.

The beautiful spring weather has no value to me. There's no sunshine in my life.