Radiation Archives - My Brain Cancer Diary

Hair Loss

My hair was falling out, so I buzzed it short.

A few days ago I noticed a small bald spot on the top of my head, along the surgery scar. It grew as I traced the itchy scar absentmindedly. Then I noticed I could pull out a few dozen hairs from the top or side of my head without even a mild tug. In the shower it washed out in clumps. It drifted into my dinner.

The radiation oncologists said this would happen. I wasn’t worried about my appearance — I just didn’t want to scare my son — so I began to wear my Bruins cap at home.

Yesterday’s buzz cut to a quarter-inch dulls the contrast of dark hair and pale scalp. I don’t look quite so mangy, but my hair is still falling out and my scalp is still itchy. I have some hydrocortisone cream to treat the itch, but haven’t bothered to use it much.

We also trimmed my unkempt and greying beard. But first we snapped these pix:

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News of the effort inspired our friend Garen Tolkin (a hairstylist, coincidentally) to share this comparison to Beowulf, which she recently read:

Please tell Bogart I bid farewell to the Gnarly Beard and await its return from its journeys to the Fifth Circle. May it return Burly. I will bow in joy and gratitude at its battle-worn magnificence! I can already see it wreathed and woven with the victor’s flowers!

He is more than Bog. He is BOG THE CONQUEROR, BOGWULF. His Thanes, Chemo and Radio his trusty sword and shield.

It’s fun to be compared generously to a hero. Losing some of my (once merely normal) agility to a brain injury makes the comparison seem absurd. But I am often the subject of magical treatments, which is a hero trope. I fit better in a comic book superhero role, perhaps, considering the radiation. Heroic acts pending.

My wife and I joked that my superhero costume should include the bizarre plastic mesh mask I wear during radiation treatments. I suggested a superhero name of “Captain Gray”, a reference to the standard unit of measurement of absorbed radiation, the gray. You could also say I’m “capped in gray”. And gray is neutral and bland, which describes my dress and manner fairly well.

Radiation

I once met a Missourian whose prescription for healthy hygiene was “shit, shower and shave.” Mine now includes having my head secured to a table and irradiated.

Fortunately, Maine Medical Center has made it easy for radiation oncology patients to access treatment with a special parking lot behind the hospital, on the edge of the Western Promenade. The radiation oncology department is in the basement, a short walk from the parking lot. It is a surprisingly quiet and easy journey, devoid of bureaucratic barriers.

I have a special ID card, but I don’t need it. The receptionist knows me, the nurses know me, and the radiation technicians know me. And my treatment almost always starts on time. Sometimes I’m early and they’re waiting for me. Usually I’m in and out in 15 minutes.

On my way into the treatment room I pass through the control room, where the technicians ask my name and birthdate, and compare my face to a file photo. With all of the high technology involved in the treatment, the security regimen lends a “secret agent” feel to the proceeding. But the technicians are disarmingly jolly.

The treatment room is dominated by a gleaming car-sized machine called a linear accelerator. (In this case, it is a Varian Clinac iX 2100). The front of the accelerator looks vaguely like a faucet, with an extended neck ending in a broad cylinder turned inward.

I know the drill now. I lie down on a padded bench called a couch. They secure my head to the couch with a mesh mask in a plastic frame, bind my feet with a super-sized rubber band, and load my Erik Satie disc into the boombox. Then the couch moves into position beneath a green laser crosshair (projected from the ceiling) which is aligned to a mark on the forehead of my mask.

The technicians leave the room and close the radiation-proof door behind them. The first measures of Lent et Douloureux build a brooding solitude, until the B-minor chord in the ninth measure finally bursts in reverent grief. (Trust me, it’s comforting).

Suddenly there is a loud buzz and a faint whirring, warbling noise. Photons stream from the “faucet” (called a collimator) into and around the tumor cavity, where they’re supposed to render cancer cells incapable of reproduction by shredding their DNA.

I imagine myself in the shower, rinsing shampoo and grime out of my hair. I repeat to myself, “You are washed in healing light,” which is a summary of a meditation I wrote in May, when my fear of cognitive impairment was still acute:

Breathe.

Breathe.

Breathe.

You lie in the soft sand of a broad and quiet beach. The Earth holds you.

Ocean waves caress the shore, swelling softly, then settling. The wind breathes with you.

You are warmed by the healing light of the Sun. You are washed gently by waves of healing energy. In the bright healing light your selfishness and bitterness fade away. They fade until they are gone, and in their place love and compassion grow.

Your mind is safe. Your memories are safe. Your powers of thought are safe.

Emerge, washed and nourished by the light of love.

Breathe.

Breathe.

Breathe.

The entire front face of the accelerator (the gantry) rotates, moving the collimator from one side of my head to the other. As it passes over my head I see the metal “leaves” of the collimator outline the shape of the tumor, and my reflection in the glass rotates as if I’m on a skewer. Bzzzzzzzz. The technicians return and rotate the couch 90 degrees for a final zap (called a field) to the top rear of my head. Bzzzzzzzz. Done.

Reverse direction, up and out. More smalltalk, see you tomorrow.

Every weekday for six weeks.

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Breathe

Self Portrait, May 15, 2011 — May 15, 2011

What was I doing before, while I was supposed to be living?

I often asked myself this question in the third week of May. The pain, shock and gloom of the days after surgery lifted, and with the return of strength and soundness I began to feel something wonderful and strange: exhilaration for living.

I felt as if I was breathing for the first time, the air was so thick and filling. Spring scents and colors seemed richer, street scenes cinematic. I was thrilled by the city sounds and the touch of the cool breeze. I thought of my life before the surgery as a pale imitation, detached and mechanical.

My recovery had many causes: rest and steady healing; care and support; the lifting of a dark depression with the tumor’s removal; and a steroid drug called dexamethasone. I was prescribed a tapered course of the potent anti-inflammatory at the May 12 hospital visit. It cured my headaches and I felt bliss, ate ravenously and didn’t need much sleep.

But I knew it couldn’t last. Dexamethasone causes both muscle wasting and weight gain. I journaled at the time:

Saturday, May 21, 2011
10:07 am

I must treasure the feeling of relief and well-being I have felt this week. I felt engaged, open, honest and grateful. It would be cynical to “blame” the dexamethazone, as it might have been just right for me at that time.

I also noted the effect was “wearing off”. The Boston sports teams of the season, the Bruins of hockey and the Red Sox of baseball, finally faltered after a run of victories. It felt appropriate.

Saturday, May 21, 2011
4:35 pm

The Bruins lost today 5-3 after leading 3-0. It was the fourth game of the Eastern Conference Finals and evened the series at two games to two. It ends a rather magical run of success for the Bruins and Red Sox combined:

The Sox have won seven in a row since losing to Toronto on May 11, roughly the date I began to recover from severe headaches. They swept the Yankees in New York; beat the Orioles 8-7 on a walk off two-run double after trailing 6-0 in the sixth; beat the Tigers 1-0 and then 4-3 (walk-off); and walloped the Chicago Cubs 15-5.

The Bruins hung on to win 6-5 at home on Tuesday then shut out the Lightning at their place on Thursday 2-0.

We’ll have to see what happens tonight with the Red Sox and Cubs…

Regardless, I’ve already seen the Red Sox win the World Series twice. That’s pretty good for a lifetime.

Saturday, May 21, 2011
11:37 pm

The Boston sports meltdown is complete now as the Red Sox give up 8 runs in the 8th (with three errors) and lose 9-3.

The buzz is gone. I feel solid, grounded, motivated — also rushed and anxious, looking ahead to the next step, and the next, and the next. I have to remind myself to stop and breathe. Breathe.

Breathe.

Sometimes I imagine I’ve been dead a long time, that I’m seeing our present time through the eyes of someone living hundreds of years from now, seeing our expired world as fresh and strange. Then I sense the moment, and imagine the depth of the events that made it. I am a fragile thing in a tiny time-and-place, with the fortune to witness it.

Courage, Revisited

How should one respond, in one’s outlook on life, to having cancer? That’s a question I answered for myself in Tuesday’s post. A commenter linked to a contrasting opinion, which I feel compelled to rebut. This is from New York Times blogger Dana Jennings‘ post of March 15, 2010:

Then there’s the matter of bravery. We call cancer patients “brave,” perhaps, because the very word cancer makes most of us tremble in fear. But there is nothing brave about showing up for surgery or radiation sessions. Is a tree brave for still standing after its leaves shrivel and fall? Bravery entails choice, and most patients have very little choice but to undergo treatment.

I would agree that conceding to treatment is not, in itself, an act of heroism. I swallow some pills and show up for radiation — hardly impressive compared to Loring’s suicide dive. But it’s not the daring of the deed as much as the quality of one’s attitude about death and dying that defines this type of courage. Jennings argues “bravery entails choice”, and my response is that courage is also expressed in the small, seemingly insignificant ways in which one approaches a challenge neither mind nor muscle can reliably meet. With this type of courage, one might say:

This is my life. I own it. This is my cancer. I own it, too, though it will probably kill me. There are things I can’t control, and my cancer may be one of them. But there are many things I can control, and will. I may be sad and scared, but I will not turn away from the truth.

With this type of courage, one scrapes and scrounges the “can” to balance an overwhelming “can’t”. For a cancer patient, deeds may be tiny but they count: words of thanks assembled with care in a sluggish mind; the exertion of an aching body to offer loving touch; and, finally, a hint of grace within shuttered repose.

Our arguments are not wholly incompatible. If one accepts that “bravery entails choice”, then one might see bravery in the choice to bear witness — the choice to transform a process of dying into a process of living.

2 down

I had the second of 30 radiation treatments today, plus the second chemo dose. So far, so good: brief, mild twinges of pain, no nausea, and ample energy.

1 down, 29 to go: by A

Hey All,

We have launched into our new normal: swallow the chemo pills 1 hour prior, drive down Cumberland Ave to Maine Medical Center, use the special card to enter the small private parking lot, take the stairs down down down and then… I don’t know what happens in the room with the radiation machine because after a short wait in the office Bog goes in alone. Then he’s out, 15 minutes later, and it’s been done. It’s so strange to not be in there with him.

And today being the first ever non-simulation day, the first day of actual radiation, the relief for me when it was done was ecstatic: the build-up over the past month had become unbearable.

I’ll let Bog describe his own experience of this new habit, this 5 days-a-week ritual.

I’m just glad it’s finally started. Bog has been reading The Hobbit to Sam, and I’ve always wondered, how did Bilbo do it? Each day, on that strange and terrifying journey away from the known comforts of home? And now I feel like I understand the journey, and Bilbo, a little better. You do it because you have to, and you begin it in order to get it over with.

Love,

Courage

Tomorrow I begin radiation therapy at the MMC radiation oncology center.

My head will be fixed to a padded table with a form-fitting plastic mesh mask, and my feet bound together with a rubber band. The table will rotate into position beneath a huge dark glass eye. Then a beam of photons will penetrate my brain, delivering the power of about 1,000 X-rays. ([10. The standard unit of measure of absorbed radiation is the gray. See this page from radiologyinfo.org for more information on radiation absorbed in typical imaging procedures, which varies depending on location. For example, spine X-rays are approx. 1.5 millisievert (1.5 milligray for photon radiation) and abdominal X-rays 8 millisievert. I am scheduled to receive a typical adjuvant radiation therapy dose of 2 gray per session, according to the radiation therapy technicians at MMC.])

The goal is to kill the cancer by damaging its DNA. The radiation will focus on the tumor cavity, but the target area will extend into healthy brain tissue. Healthy cells will likely die, too. It’s possible I will suffer what they call “cognitive impairment”. The odds are 1 in 10 that radiation therapy will dull my intelligence noticeably. ([20. Consultation with radiation oncologist.])

And that is troubling.

My surgeon said we’re going to war. “You’re going to battle with some good things on your side: age, neurologic function and extent of surgery. But it’s still a big battle.”

Radiation is my weapon. The enemy is within. Yet strangely the cancer summons better angels. The war is tragic, but the struggle is noble.

I walked alone in the cool May rain among the monuments of courageous men, along the Eastern Promenade, overlooking Casco Bay. I read the tales of their heroism, their names frozen in stone and metal. For a moment, I thought I could measure their sacrifice. I cried, and the rain soaked us all.

I am becoming a memory. Strength fades. That’s true for all of us. But courage endures. Witness:

The soldiers of the War of 1812 who died there by the bay, prisoners of the British, captured in the disastrous Battle of Queenston, Canada. Some lost even their names. Courage. ([25. Inscription at monument, Eastern Promenade near Quebec Street, Portland, Maine]) ([30. Wikipedia article “Battle of Queenston Heights“]) ([40. An Account of the Battle of Queenston Heights, October 13, 1812, from The War of 1812 Website])

Corporal Jacob Cousins, Company C, 328th infantry, killed in Meuse-Argonne, France, October 14, 1918, in the bloody Allied offensive that won the first world war. Courage. ([45. Plaque at monument, Eastern Promenade at Cutter Street, Portland, Maine]) ([50. Wikipedia article Meuse-Argonne Offensive]) ([60. Meuse River-Argonne Forest Offensive, 26 September-11 November 1918, from Military History Encyclopedia on the Web])

The sailors of the battle-scarred heavy cruiser U.S.S. Portland (CA-33), “Sweet Pea”, who accepted the Japanese surrender at Truk in the South Pacific, Sept. 2, 1945. Courage. ([65. Plaque at monument, Eastern Promenade at Fort Allen, Portland, Maine]) ([70. Wikipedia article USS Portland (CA-33)]) ([80. Portland, from Dictionary of American Naval Fighting Ships])

Fighter pilot Major Charles J. Loring, Jr., who “elected to sacrifice his life by diving his aircraft directly into the midst of the enemy emplacements” in Korea. Courage. ([90. Plaque at monument, Eastern Promenade at North Street, Portland, Maine]) ([100. Wikipedia article Charles J. Loring, Jr.]) ([110. Printable fact sheet Maj. Charles J. Loring Jr., from National Museum of the US Air Force])

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. It is the courage to part the choking cloud of edema and seize the moment.

Ours is the courage, the resolve, to witness the events that carry us into history. Whether moments of great sacrifice or the sum of small decisions or simple acquiescence, our heroic deeds happen to us, as much as they are accomplished by us.

Tomorrow, we fight. May I be worthy of the chance.

Courage.

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