About a Boy

Meet the boy.
Meet the boy.

Since I was a teenager, I knew I wanted children. I didn’t meet Robin until I was 43, so I knew I would be an old dad, if at all. We didn’t have to wait too long. Will was born in the summer of 2010.

Our happiness was cut short. Exactly one year later, I was back in the same hospital where he was born, enduring my first chemo treatment (we moved the date of his first birthday party.)  For months afterward, when I cried about having cancer, I was really crying about saying goodbye to Will. The thing that made me happiest was the same thing that made me saddest.

That “thing” is now three and a half. His curly hair is from me, his good looks come from his mother, and his blue eyes remain a mystery. (Right, Robin… Robin?)  He loves tools and trains and superheroes. He is one of the happiest kids I have ever met.

He is also our secret weapon against cancer. Because of him, I have never wondered if the struggle was worth it.  We used to bring him to medical appointments, hoping he would charm the doctors into doing a better job at saving my life.  If he were just a little cuter, I could use him to get tickets to Book of Mormon.

When I was first diagnosed, I hoped for remission, but told myself I would settle for five more years — just long enough to ensure he had a good foundation: kind, confident and strong enough to grow up without a father.  It’s been nearly three years and he’s off to a great start.

The “cancer and death”  conversation seems far away, right now. He knows I go to hospital, and he’s seen me hooked up to the chemo drip. We’ve told him it’s to take away my cough.

I was in hospital the other day, for a pre-chemo blood test. I took Will with me. I sat shirtless on the edge of a bed, waiting for the nurse. Will sat in a chair, asking me questions about the medical equipment in the room. Then I stared into space, thinking about cancer, death, and Will, like I always do when I’m in a hospital.

Will looked at me. “You’ll be okay daddy.”

Well, I’m okay today, Will. You make for great todays.

 

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My cancer, part III (in a trilogy)

Two months after diagnosis, August 2011.
Post-diagnosis, pre-chemo, still coiffed.

For a few weeks in June of 2011, there was a lovely moment each morning when I awoke, stretched and thought about coffee. That all took about two seconds. Then my new reality covered me like a heavy blanket. Back then, those two seconds were the highlight of every day. It didn’t last.

About a month after diagnosis, Robin called me in tears. Our original oncologist had just called to report the biopsy results, showing probable synovial sarcoma, as suspected. She also used a phrase we hadn’t heard before. Stage four.

“What happened to stage two and three?” I asked, dismayed that there were still ways for the news to get worse.

When you google synovial sarcoma, you will read that stage one is very treatable; a surgical snip, perhaps followed by a cleansing dose of radiation. It sounds like a spa weekend. But stage four triggers a different, near-unanimous prediction. The phrase I recall is: “The outcome is grim.”

Grim? That’s my word? That’s like pulling  “onomatopoeia” at the county spelling bee.
Website after website confirmed it. One went with “very grim”, lest hope linger. It could be a lyric from the worst musical ever: “Grim is the word, is the place, is the motion. Grim is the way we are feeling!” 

The main thing I learned from researching my disease on the internet was to stay off the internet. (I did google “celebrities who died from synovial cancer.” The best-known is Robert Urich, a handsome early ’80s actor who had his own crime-solving series.)

So that was Robin and I, back in the summer of 2011, searching for optimism in a coal mine. We wondered if an earlier diagnosis might have identified the cancer before it metastasized, but no amount of second-guessing could change that. My family doctor told me he was a general practitioner who might not recognize every cancer he encountered. I appreciated his candour; I just wished he had referred me months earlier, when I first reported the visible lump. We hugged it out, over the phone.

If I  don’t have time remaining to travel the world, write a screenplay, or watch my son grow up, then I definitely don’t have time for anger.

My cancer, part II

My lungs, plus some unwanted visitors. (photo robin summerfield)
My lungs, plus some unwanted visitors. 

A cancer diagnosis brings on an immediate mental fog; a carnival swirl with everything moving around at once.

Do I have enough life insurance? Scratch that, I am NOT going to die. I’m just going to lose my hair and puke for a while. Worst case, I lose the leg. How will that  affect my golf game? Can I ask the doctor how that will affect my golf game? Since I am a terrible golfer, does it matter? Do I have enough life insurance?

And how much do I withhold from my mom, regarding the outcome, because the outcome,  prognosis, prediction is everything!

Back in June, 2011, my belief that Robin and I were in for a terrible but survivable year was challenged by the increasingly dour parade of doctors who came to see us. Each one seemed more pessimistic than the one before.

They said things like “Treatable, not curable.” There was a lot of sympathetic head-nodding, plus furrowed brows. Finally,  we asked, “Should we still hope”?

“Oh yes, hope is… Hope is good. (Head nod.) It can help deal with what’s coming. (Brow lowers.) Some people feel it can affect outcomes.”

That sounds a bit like undercoating on a new car. No one can explain what it does but, hey, why not? We left the hospital before they sent in a doctor carrying a scythe.

After a biopsy, even the Mayo clinic couldn’t answer unequivocally, but the consensus was that I had a synovial sarcoma (a soft-tissue tumour) on a muscle or tendon in my left thigh, above the knee.

And it had  metastasized.

That means travelled, and it is the worst kind of travel there is. Worse than a European bus tour with drunken Australians.  Worse than a weekend getaway on Cannibal Island.  Worse than flying United.

My sarcoma had travelled to my lungs, where it set up six small but deadly encampments.

My Cancer, part I

Meet the wife.
Meet the wife.

My cancer started with a sore leg, first noticed after walking many blocks of Toronto streets in December, 2010. I put it down to hard shoes and harder asphalt.

Three weeks later, my left calf was thick and spongy. I had a blood clot.

But why? I was in good shape, pretty active. I googled clots, and a few days later asked my family doctor if it might be caused by a tumour. Nope, he said.

A month later, a small round bump appeared on my inside left thigh. Cancer? No, said my doctor. A month later, the lump looked like half an egg. Cancer? No cancer, I was told.

Then the pain started. Excruciating lightning bursts up and down my leg. I was referred to a hematologist, who said “You should see an oncologist.” I felt relief, because if a doctor is going to dismiss my fears as uninformed  hypochondria, I want it to be a doctor in the appropriate field.

One MRI later, one of Manitoba’s top oncologists told my wife and I that she was “99 per cent sure it’s not cancer.” (Since you already know where this is going, let me stress that I am not exaggerating for effect: the figure quoted to us was 99 per cent.)

So, back to the hematologist who scheduled me for surgery to repair a leaking vein.  On June 15, 2011, I was in hospital, with my wife, waiting for the move to the O.R. They first sent an exploratory camera down my thigh to get a look at the battlefield. Standard stuff.

Then, they sent me to Radiology for a scan of my lungs. Not so standard.
Two hours later, the surgeon — the hematologist — entered my room.

“It’s not good news,” he said quietly.
To this day, I remain grateful for the straightforward and calming way he told my wife and I that I had cancer.

Short-term thinking

Welcome to the Big Diseasey. The blog has nothing to do with New Orleans, and everything to do with metastasized synovial sarcoma. A.K.A. Stage four cancer. Why “The Big Diseasey?”  Because all the good names were taken. A Sense of Tumour? Taken. Not Dead Yet? Taken. Six Feet Over? Taken. Lately, I wanted to call it Departure Lounge, but that was taken and, frankly,  sounds a bit final for someone who hasn’t yet abandoned all hope.

In fact, my prognosis is unknown. According to the many websites I visited following my diagnosis in June, 2011, the outlook is “grim.” And yet for three years now, I have woken up each morning, ready to squeeze at least one pleasant memory out of the day. So far, so good.

It’s not all bad. I finally have a good reason to stop investing in RRSPs. Or, more accurately, to not feel guilty about not investing in RRSPs. Come to think of it, even buying a calendar is a bit of a risk. Maybe if they came in three-month versions, I would. When I start watching a new TV show, I ask myself, “Am I willing to get hooked on this, knowing I may not live to find out if they ever co-exist peacefully with the zombies?”

Cancer keeps you thinking short-term. After my diagnosis, I stopped buying clothes or CDs, because I didn’t want to waste money. I wondered how many times I would actually wear a new shirt. Or how often I would listen to new music. Finally, this winter, I broke down and bought some clothes. I better get more than one season out of them. If not, my wife will have to give them away. Or look for a new husband in a 44 Tall.

Nostrildamus

 

Snot catcher? Or me snorting a bat? (photo robin summerfield)
Snot catcher? Or me snorting a bat? (photo robin summerfield)

In time, we can talk about the nausea, or the fatigue, or the many unexpected side effects that pop up in the days following a three-day chemo session. And of course, there is the constipation — post-chemo, my internal organs most resemble the unoiled Tin Man in Wizard of Oz.

Today, though, it’s about hair loss. The kind you don’t expect. Cancer and chemo have shown me exactly why we have nose hair, something I had never ever contemplated. Obviously, it is about function over form, since I’ve never seen a commercial where a nose-hair model shakes her face and releases a long, luxurious thatch of black nostril hair that bounces in slow-motion.

What I’ve learned is this: nose hair is a tremendous snot-catcher. It’s a beaver dam up the bridge of your nose. And when it’s gone, you lose not only the thing that holds back the stuff, but also the very thing that is supposed to alert your brain re: the rebel flow.

As a result, I get concerned looks, mid-conversation, from people trying to alert me, in the politest way possible, that I resemble a three-year-old. When I use my putter on the golf green, I have seen silver parachutes drop down from my face to splooge the ball. On a windy day, my golf partner quietly moves a few steps away. And on any windy day, it’s a constant, wet ebb. So these days I sniff a lot, and carry handmade handkerchiefs

Given a chance to reclaim one chemo-ravaged section of hair, I would choose eyebrows first. With them, you just look bald. (Without them, you look like an alien or a slightly grey man from the future.) Then, I would pick nose hairs. Living with cancer challenges me to retain as much dignity as possible. Avoiding liquid-lip goes a long way. So appreciate your nose hair… give it a trim tonight!