My dead husband haunts me

I'll be back.
I’ll be back.

 

For a serious chunk of my adult life, I have worked in newsrooms.

In early February, I was hired as an associate producer for a national media company. It also happens to be where my husband Mike worked before he died. I had visited him there many times. My son called it, and still calls it, ‘Daddy’s office.’

Since starting there, I have never questioned my decision. I love it for all the same reasons I loved my former newsroom at The Calgary Herald. I am at home.

My only trepidation? How would I cope with working in the same place as my beloved? How would it be working with Mike’s colleagues?

For the first few weeks, it felt odd. While walking the hallways solo, I’d get an odd feeling, a presence walking with me. OK, to be clear, I’m not talking Poltergeist here.

Instead, competing feelings of discomfort and comfort battled. I have fought back tears and then caught myself smiling, thinking of Mike walking these same hallways.

Turns out, Mike is still walking these hallways. Mike has a doppelgänger.

The first time I saw this man, his back was turned to me. He was standing 20 feet away, fiddling with a TV camera. He has the same body shape as Mike, tall and lean. He has the same curly black mess of hair that Mike once had. He wears black-framed glasses, like Mike once did. And he has the same, beautifully wrinkled face and fantastically bold nose that Mike had.

The first time I spotted The Twin, my heart leapt with joy. For a beat, my brain, heart and body forgot Mike was dead. And then, just as quickly, my heart hurt.

In the ensuing weeks since that first sighting, I now see this man everywhere. We have even exchanged a few words. He caught me raiding notebooks from the TV staff’s stash. I defended my filching and we had a chuckle.

Another time, we nearly ran into each other in the hallway as we cornered the same turn from opposite directions.

He’s everywhere. That’s not exactly surprising. The newsroom isn’t gigantic. I see everyone, everyday, I’m sure. But The Twin, jumps out at me from across the room, every time.

I know his name. (Someone mentioned his name one day in passing.)

Other than our notebook ‘drama,’ I have never spoken to him.

And that’s fine. He’s not Mike. And maybe he’s really a jerk. That would suck.

Somedays when I spot him, I think about running up to him and throwing my arms around him for a long, sweet hug. It’s a thought I would never act on.

Stalking and harassment aren’t my jam. Silently, staring at him from across a room is my jam.

The Twin does his thing, and I do mine. We live in the same world. And for whatever quirk of the universe, we work in the same space.

And, he’ll never ever know that his presence haunts me.

Grieving Pains

IMG_7497

 

Just recently, bumps, scratches and bruises have mysteriously appeared all over my body.

A quick inventory: On my left forearm I have an deep yellow, inch-and-a-half-long bruise. On the underside, I have an angry red scrape that curls around from front to back. On one palm, I have a wee boo boo. Further down, I have four pink slashes, in various states of healing, across my shin.

And yesterday, I slightly burned my right forearm accidentally blasting hot water instead of cold while  washing dishes.

Other than the singed forearm, I have absolutely no recollection of how I got these wounds. I don’t remember any fisticuffs in my recent past, or ever, really. I don’t think I’ve challenged anyone to a duel and don’t recall getting up in someone’s grill.

But since Mike died I am a one-woman wrecking crew. Unfortunately, my body is the demolition site.

I am more injury prone than my pre-K son. I run into walls, misjudge the width of door frames and walk into open cupboards with my face.

In the past, I have generally had control of all my faculties and all four limbs. I have never carried myself like a ballerina but I’m no lumbering galoot either.

Many bizarre things happen when your spouse dies, I am discovering. Along with your memory and day-to-day brain power, you lose a sense of your own body and the space you take up. Other than the obvious pain, and feeling like a dummy, it troubles me that I have become a klutz.

Turns out, I am a completely normal klutz. Clumsiness is directly related to stress, my social worker told me. At least I think it was her. My memory is shredded, along with the skin on my shin.

Even though I honestly and truly feel like I am doing quite well with this whole grief thing, my stress tank is full. And when your mind is whirling with every other little and big thing—settling the estate, raising a little man, and doing my nails, for example—there is simply no room for your body to naturally remember what to do and how to navigate through the world. While that’s not a scientific explanation for why I am suddenly Buster Keaton with bruises and a lot less funny, there’s some comfort understanding the method behind my body’s madness.

Like many stages in the grieving process, this too shall pass. Until then, I hope to retain all limbs.

One wobbly step sideways….

Need these in a 36" waist in a cotton- spandex blend.  (photo: whereibuyit.com)
Need these in a 36″ waist, cotton- spandex blend. (photo: whereibuyit.com)

 

Two weeks ago I began to experience vertigo. It wasn’t as interesting as in the Hitchcock movie. There was no murder and no Kim Novak — just a lot of swaying from side to side.

On Monday, it was worse.  I walked the dog around the block and I’m sure my neighbours concluded I’m a drunk.

Luckily, I was scheduled to enter hospital Tuesday for three days of chemo. I told them about it. They said, don’t worry, it’s likely an inner ear infection, not a brain tumour. They ran a CT scan on my head.

Tumours. Two of them, both small, sitting on the back of my brain, causing no ill effects at this point. (The vertigo was completely unrelated, which leaves me wondering what cosmic force gave me the spins in order to find two tumours no one knew existed.)

My oncologist called me with the news and did his best to put my vandalized mind to rest. These are tiny, very treatable, and “a minor setback.”  He told me I am an excellent candidate for a gamma knife procedure. That’s a newish technology that burns tumours with focused beams of radiation, without opening up the skull.

It sounded good, but later that evening I was struck by a frightening epiphany. Gamma radiation. Gamma rays? I know what that means. I’ve read the literature and I’m well aware of the risks.

I could transform into a hulking green rage monster with super-strength and an affinity for purple pants. I might turn into an elasticized man, a flaming torch or a walking pile of orange rocks. I could end up an invisible girl.

Where would I even find a pair of purple pants? I guess I could go clothes-shopping with my mother; she always found me clothes I wouldn’t be caught dead in.

Maybe my powers would be less jarring. Given the advances in medical science, they may have gained some control over the side-effects. I could, for example, gain semi-super-hearing, allowing me to listen in on conversations a full 20 feet away. (Maybe not the whole conversation, but enough to glean the gist of it.) Maybe I’ll be able to predict which elevator door will open first.

And then, how would I use those powers to benefit mankind?

With mediocre power comes a sliver of responsibility.

All right gamma rays, do your worst. Or best. And to the surgeon, please, don’t drop the gamma knife and cut my brain in half.

And thank goodness for vertigo. Now please make it go away.

 

Why me? Why not them?

One phrase forbidden in our home is “It’s so unfair.” Of course cancer is unfair, but saying that aloud is self-pitying and likely invokes bad kharma. There’s nothing fair about cancer. Short of smoking or using your microwave to make a roast, there’s not much people do that invites this disease.

That said, I am granting myself a one-day exception. Today, I am asking:  “Why me? Why not one of them?”

Here are ten people more deserving of cancer.

10) That guy who talks on his cell phone LOUDER than in his normal voice. Wouldn’t it make more sense to lower his voice during a private conversation? If there’s any justice, he will catch cancer from his phone.

9) Anne Hathaway. Everyone loved her, and then everyone hated her. I don’t know why, since she seems really nice, but I’ll go along.

8) Movie talkers. Every one. Cancer of the tongue. When their doctor enters the hospital room for the first time, they can whisper “Who’s this guy?  Have we seen him before?”

7) Vladimir Putin. Because he’s lived a good, full life, and yet it still seems like there’s so much more he wants to accomplish. I know this one seems really unfair, but that’s cancer.

6) People who generalize. All of them.

5) Hitler as a baby.

4) Anne Hathaway as a baby.

3) The world’s oldest living person. I mean, come on!

2) A mean blind person’s seeing eye dog.

1) Former leaders of the Khmer Rouge who talk in movie theatres.

And that’s it! If they can’t get cancer, maybe a really bad toothache or dial-up internet.

Chemocide

Chemotherapy is the ultimate frenemy. One day it hangs out with you at the mall. The next day it tells your friends you’re a bitch. It can save your life, but it will make you so very sick.

I was initially on chemo for 12 months and then off it for 13 months. Then new tumours appeared, and I began a second course in August, 2013. That’s 19 months of chemo, or about 24 rounds and counting. The drugs in question are ifosfamide and doxorubicin.

Here is a list of all the side-efffects I have experienced, in the rough order that I encountered them. Some were temporary; some appear after every round.

Fatigue: I had an infant son, so this was nothing new.

Nausea: Not as bad as you think, thanks to six different pills.

Infertility: That one hurt.

Hair loss, head: For a few terrible days, I became one of those knobs who wears a fedora.

Sore mouth: Gargling salt helped.

Abscessed tooth: With a depressed immunity system, a minor infection ballooned and I lost a molar. It made a crunching sound when the dentist pulled it from my jaw.

Dehydration: Which lead to…

Constipation: The worst. So bad that I have twice gone to Emergency. Both times, I walked out after a six-hour wait, because Emergency nurses prioritize the guy with the gunshot wound above the guy who can’t poop.

Change in taste: Even water tastes gross after chemo.

Infection: The port implanted in my chest to receive chemo injections became infected. I went septic. My doctor, who can be dryly funny, called it “a minor life-threatening incident.”

Hair loss, eyebrows: I officially looked “sick”.

Hair loss, eyelashes: My eyes compensated by secreting a protective goop overnight. Most mornings, I literally pull my crusty lids open.

Cracked, soft fingernails: This one costs me money, as I cannot pick up a dropped coin from a flat surface.

Neuropathy: Tingling “pins and needles” feet.

Hair loss, everywhere else: Great, it’s grade nine gym class all over again.

Mucositis: Inflamed esophagus caused heartburn and made every meal feel like I was swallowing rocks.

A blood clot in my leg: I spent a week on the couch, unable to move. Painful, but what really hurt was daytime television.

Low platelets: My nose bled like water. My doctor called this “a major life-threatening incident” that could have triggered a stroke. He reduced my chemo load by 20 per cent.

Rashes: Two types at once, on my face and body. Itchy!

Then there’s the most dangerous side-effects: the ongoing damage to my heart, kidneys and bone-marrow.

On the plus side, the periodic loss of appetite has me at my ideal weight!

Some side effects you work around. (Photo by robin summerfield.)
Some side effects you work around. (Photo by Mike O’Brien.)

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.

 

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.

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!