Side Effects Archives - My Brain Cancer Diary

It’s My Birthday

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.

Decline

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. ([10. Symptom Time Line from BrainHospice.com])

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. ([15. 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.])

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. ([20. Courage])

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. ([30. Tom Lubbock: a memoir of living with a brain tumour from The Guardian])

NOTES:

Marinol

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. ([10. 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?]) 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. ([20. 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).])

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:

The $800 Puke

A 250 mg Temodar capsule costs about $800

I started my new Temodar prescription last night: 250 mg per day for five days. The dose was doubled from the six-week radiation period.

I wasn’t worried about side effects, after tolerating the lower dose without a hint of nausea. At 2 a.m. I woke with the warning signs of impending sickness: a stiff, heavy tongue, rich drool and a passionate desire to see my reflection in the toilet bowl.

My first reaction was to worry how much of the approximately $800 in Temodar I’d be able to keep down. ([10. Based on a calculated price of $3.35/mg, which seems fairly stable across dosages.]) I heaved sparse drooly drips and felt better. There was no food or anything of substance in the bubbly emesis. I wondered: could I drink that? No, I don’t think so. Flush.

I regretted not taking a Zofran pill first. I had casually dismissed the anti-nausea med after only the first week of chemo, back in June. I went back to bed, but sleep escaped me. I was still queasy. I took a Zofran.

A few minutes (maybe an hour) later I was back in the bathroom vomiting, with extra volume but still no color save a constellation of orange flecks.

In the grand scheme of things, might a small deficit of Temodar affect my chances of survival? Perhaps there is a plausible explanation? I felt ill yesterday after swimming near the sewage treatment plant. I still don’t feel quite right.

OK to leave? — OK to live? Oh, *OK to leave* the Temodar.

NOTES:

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:

[Show slideshow]

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.

[Show slideshow]

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.

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.

[Show slideshow]

NOTES: